A LOVING TOUCH

West High teens take chores for Extra Hands, an aid group for ALS sufferers, to heart

By Shelly Leachman, Staff Writer
Copyright 2008 The Daily Breeze

For one afternoon every week, Shiori Nakaya and Hilary King team up to complete tasks the average teen is likely to loathe - dog walking, dishwashing, weeding and, on one recent occasion, window washing.

" which is something I'd probably never find myself doing at my own house," joked the 18-year-old King.

"Yeah, we actually find ourselves wanting to do chores here," said 17-year-old Nakaya. "We're willing to do whatever we can to make her life easier."

"Here" is the Torrance home of Ann Spring, 49, who suffers from ALS, or Lou Gehrig's disease, a progressive neurological condition that over time results in total paralysis for those so afflicted.

Spring, who was diagnosed nearly eight years ago, today can move only a couple of toes and, ever-so-slightly, her head. She depends on a breathing machine at night.

She can still speak, though her speech is heavily slurred. And she can absolutely still smile, which she does frequently and widely, especially when discussing King and Nakaya.

"They're so much help, they're great," Spring said recently of the pair, who have also helped her write Christmas cards, rearrange rooms, set up software allowing her to use her laptop and, once, made taco casserole.

Longtime friends and seniors at Torrance's West High School, Nakaya and King have been assisting Spring every Tuesday since last fall.

The other half of their four-girl circle of friends - Elena Inouye and Caitlyn Corrao, both 18 - have been doing the same thing every Sunday in the tiny Gardena home of ALS patient Richard Dominguez.

The foursome is joining together to volunteer for Extra Hands for ALS, a still-young nonprofit that recruits high-school and college students to aid people living with Lou Gehrig's disease.

Los Angeles and Orange County program manager Val Waterman describes the national group's goal as twofold: to provide students a volunteer opportunity and expand awareness of the disease in the process.

"We take the daily burden off families who wish to use our services but the students are learning so much more, and getting so much more out of it," said Waterman, who works closely with the West quartet as their adult mentor.

"They learn about the disease, but also about courage and perseverance and strength and all that stuff that really adds texture to one's life," she added. "For a lot of them, maybe in 10 or 15 years they'll look back and go, `Whoa, that really changed my life."'

The four West High girls are already saying that.

What began as a short-term stint to fulfill their senior-year service requirement has become an ongoing labor of love and a desire to make a difference.

"You don't expect to get so attached, but you do. We do," King said. "It's not just gaining a friend. When we get in the car and talk about what we did here - we don't come expecting rewards, but this is very rewarding. You flat out get more out of this, out of helping someone, than you'd ever imagine."

Inspired beyond their own expectations, the teens have taken an Extra Hands suggestion to promote ALS awareness not just to heart, but to the extreme.

In between the prom-planning and finals-cramming, the four friends also managed to conceive and organize a fundraiser set for Saturday morning.

All proceeds from their Raising Awareness for ALS Relays - a family-friendly foot-racing event to be held on the West High track - will go to Extra Hands and be funneled into ALS research efforts.

"However much we make, as long as people show up, it's OK," Corrao said of their hope for their fundraiser. "We just want people to know about ALS, to be aware, and this is a start."

"We want to get the community together to talk about a disease that often isn't talked about," King added. "To open people's eyes. Doing this has opened my eyes to the kinds of things that can happen to people we know and love and care about."

One of those very people - Ann Spring - plans to attend on Saturday. She'll get a special introduction by her teenage friends before the races get under way.

As she listened to the girls engage in a rapid-fire, 11th-hour planning session this week at her home, Spring smiled, caught eyes with a new acquaintance and said, "They're angels. They are."

WANT TO GO?

What: The Raising Awareness for ALS Relays, a fundraising event to benefit nonprofit Extra Hands for ALS. Proceeds will go toward research into Lou Gehrig's disease.

When: Gates open at 9 a.m. Saturday; races begin at 10 a.m. and should conclude by 2 p.m.

Where: West High School, 20401 Victor St., Torrance.

Cost: $20 per team; there is a suggested $5 donation for spectators.

Information: To learn more about the event, visit www.rafar.org. To learn more about ALS or the group, visit www.extrahands.org.

Extra Hands Volunteer Profile: Margot Danis

by Meredith Boggess

Because of an increasing emphasis on community service as part of a well-rounded curriculum, many young adults find their philanthropic niche during their high school years. That was the case with Margot Danis, a recent graduate of John Burroughs and active volunteer with Extra Hands for ALS, an organization that pairs student volunteers and adult mentors with families affected by ALS. “I got involved sophomore year after being inspired by my sister, who was active in the organization through its Burroughs chapter,” explains Danis.

A demanding theater rehearsal schedule prohibited Danis from making the normal weekly commitment, so she became very involved in the organization’s Project Days, which sends groups of students into homes on the weekends to complete larger home improvement projects such as painting or yard work. “We do anything and everything that needs to be done, from laundry, yard work, dishes or just playing with the kids,” says Danis.

Despite her other obligations, she made staying involved with Extra Hands a priority. “It’s such a first-hand experience,” she says. “Unlike organizing a bake sale or a canned food drive, you get to see in a very personal way how your efforts improve the lives of those affected by this devastating disease.” Danis says it’s easy for she and her friends to give up an hour or two on a Saturday morning. “When you see what a big difference it makes in the lives of the people you’re helping, all of a sudden, the time commitment becomes something you look forward to rather than seeing it as a sacrifice,” she says.

Danis explains that the nature of ALS makes their efforts even more important. “It can be very emotional. We helped out a family with young kids. The father wasn’t even 40, and he couldn’t talk or move,” she recalls. “There is no degenerative effect on the mind��”you still think clearly but are trapped in your own failing body. They are glad we help but frustrated they can’t do these things for themselves.”

During her college application process, Danis realized how much her experience with the nonprofit had inspired her. “With Extra Hands, every time you volunteer, you get the feeling of having done something that mattered.”

"It’s such a first-hand experience..."

2008 Ladue News Charity Award Winner: Extra Hands for ALS

by Meredith Boggess

How do get your teenager to cut the grass or do the dishes? Make it meaningful. That’s the vision behind Extra Hands for ALS, which pairs young adults with families affected by Amyotrophic Lateral Sclerosis (ALS). The student volunteers do household chores like cleaning, laundry and yard work that become difficult to manage for those busy caring for a loved one with ALS. In return, their exposure to the incredible courage of these families gives them appreciation for the common human experience and leadership skills that will last a lifetime.

The organization was founded in 2002 by St. Louisan Jack Orchard in the wake of his own ALS diagnosis. “Jack has an amazing story,” says executive director Jim Presbrey. “He grew up in St. Louis, graduated from John Burroughs and went on to get degrees from Harvard and Stanford before accepting a job in Moscow to help create the city’s fist version of a stock exchange. From there, it was on to San Francisco, where he worked on various start-up companies.”

Wherever Orchard went, success seemed to follow, says Presbrey. But in 2002, he began to suffer from fatigue and muscle twitching in his upper body, which he at first attributed to a gym injury. But after meeting with a long string of specialists, Orchard was finally diagnosed with ALS. “It was devastating news,” says Presbrey. “Jack was told it was fatal, that there was nothing they could do, and that he should get his affairs in order right away,” he says. “He and his wife at the time felt completely helpless in the face of the news and decided then that they never wanted another family to have to hear those words and feel the way they did.”

Orchard immediately sprung to action, organizing an effort that eventually became Extra Hands for ALS. “After his diagnosis, Jack decided to move back to his hometown of St. Louis to be closer to family. Right away he got to work on empowering other families,” says Presbrey. Orchard recognized a need in the ALS community for in-home assistance and knew that college and high school students were the perfect volunteer base. Soon, pairs of young adults were matched with families affected by ALS, and Extra Hands chapters started popping up in schools and communities around the country. “The first was in St. Louis, and the volunteers came from Jack’s alma matter, John Burroughs,” Presbrey says. “Jack was always such an innovator. He had this vision of an army of energetic, inspired young adults, who might otherwise have never been touched by the disease.” Although his disease has progressed over the years, Orchard still remains active in the organization.

More than 320 families have reached out to the organization for help, and 25 families in our area are currently participating in the program. “These are not people who thought they’d ever need someone to empty their dishwasher or cut their grass,” explains Presbrey. “But people with ALS are no longer able to contribute to household activities, and those that love them find more and more of their time dedicated to caring for them, and the household becomes strained.” That’s where the volunteers step in, who, in addition to completing chores, are there to do whatever is necessary. “They can be little things, but they make a huge difference in the day of that family,” Presbrey says. Sometimes, persons with ALS want to create a legacy and depend on the volunteers to scrapbook, organize photos or type out letters to their children. “It can be very emotional,” he says. “But it gives the families a new sense of purpose. Not only does it free them of the stress of dealing with life’s mundane chores, but it also allows them to set an example of courage and determination in the face of adversity.”

Presbrey says the emotional bond between the volunteers and the families they serve is a strong one. “We provide initial training and ongoing support to all of our volunteers,” he notes. “We match each family and pair of volunteers with an adult mentor so they have someone to bounce their feelings and emotions off of. Mentors also are able to provide the families with community referrals for area resources available to those affected by ALS.”

The reality of ALS is that some of the student volunteers must in turn deal with the passing of the person they get to know during their time of service. “It happens. Five thousand people will die of ALS this year, and 5,000 more will be diagnosed,” says Presbrey. “But the bonds they share are strong. In one case, a volunteer was even asked to give a eulogy at a funeral service.” But despite this possibility, young adults seeking to make a commitment have found a lot of joy by participating in the program. “Some continue to volunteer in college and others go on to study social work or medicine after finding a niche by volunteering with Extra Hands,” he says. “But more than anything, the organization helps relieve some of the terrible burdens of families dealing with an ALS diagnosis, and it helps a group of young people see beyond what’s on the outside, beyond the disease”in a way they’ll never forget.”

He rules with his eyes

Copyright 2008 Idaho Health

Joe Harris can’t move his body, so he runs a nonprofit agency called Extra Hands for ALS with nothing but his two eyes and his agile brain. Computer software he directs with eye movements helps him communicate, and an army of volunteers serves as his arms and legs. The Boise-based agency has two purposes. The first is to find high school- and college-age volunteers to help people like Harris who are diagnosed with amyotrophic lateral sclerosis, or ALS.

The second kind of help goes to the volunteers. They get the benefit of deep bonds with other families and with their communities. They gain experience if they plan health care careers. Sarah Barsness, assistant manager of the Boise chapter, says working with Joe is not like working for other bosses. Joe has verve times 10.

"He has a lot that he wants to get done, and he is very, very devoted to working with people with ALS," Barsness said.

Extra Hands chapters nationwide operate on annual budgets of $75,000 each in government grants and donations. They use volunteers to help people with ALS perform tasks the rest of us take for granted: tearing open mail, cleaning the house, getting groceries or doing yard work. Students have adult mentors who visit the families with ALS each month.

Harris’ ALS, or Lou Gehrig’s disease, is a neurological illness that makes it increasingly difficult for him to move, even as his brain remains vital and active. He cannot speak, and he cannot breathe on his own. The disease is fatal, but Harris refuses to give up. "I want my family and friends to be proud of me, especially my (7-year-old) daughter," Harris, 36, wrote in an e-mail. "I want her to understand that the most important thing you can do in life is have compassion toward others and give back to society in the form of helping those that may be less fortunate," he wrote.

Among Harris’ goals for the agency is to boost the number of families who get "extra hands." In 2007, the agency helped about 17 people with the disease. Statistically, about 40 to 50 families in the Valley may live with someone who has the disease.

Harris learned he had ALS as a newlywed just starting his career. It still is hard. "It makes me sad and sometimes depressed to think I’ll have to leave my family someday," he said. "It also makes me angry to have to live my life so differently than I want to. "But the love of my family and my quest to make the Boise chapter .... the very best it can be, often leads me away from those emotions and gets me back on track."

Volunteers serve as Extra Hands for those with ALS

Copyright 2008 Idaho Statesman

The Valley chapter assists sufferers and their families and works to bring attention to the disease.

Jeannine Marinier began volunteering with Extra Hands in June as an adult mentor to high school and college students.

"I was looking for something to do volunteer-wise in the community. My grandma passed from ALS. I thought, 'Hey, I know a little bit about that' and thought it would be a good way to give something back," Marinier said.

Marinier's job is to coordinate volunteer sessions between family and students.

"Our responsibility is to go out there a minimum once a month . . . and be the go-between person," Marinier said.

If regular volunteering doesn't fit a specific schedule, Marinier said volunteers can help out once or twice on larger projects, such as repairing a wheelchair ramp.

"You always leave there thinking, 'OK, I've helped out this week.' Knowing that you've brought some joy and helped everybody else," Marinier added. "I've seen what a great help volunteering is with just the little things."
BY KRISTI COFFMAN - kcoffman@idahostatesman.com
Edition Date: 01/24/08

When Boise resident Joe Harris was diagnosed with amyotrophic lateral sclerosis - commonly known as ALS or Lou Gehrig's disease - in 1999, he went to the Internet hoping to find information and support.
Harris learned that as many as 30,000 Americans have ALS, with an estimated 5,000 people diagnosed with the disease each year. He also found that there was relatively little support in the Treasure Valley for those coping with the disease .

Harris decided to do something.

"(ALS) is a terrible terminal disease that takes away everything physically ... (including) the ability to breathe ... and leaves the mind. It takes a tremendous amount of courage for the people suffering the disease and their families to survive each day," he said.

So Harris started the Boise chapter of Extra Hands for ALS, a national voluntary service organization helping people with ALS and their families.

ALS is one of the most common neuromuscular diseases worldwide, yet it doesn't get enough publicity, Harris says.

"The Boise area didn't have an ALS clinic, the ALSA, or the services that the Extra Hands could provide," he added.

Harris, with the help of his mother, Connie Stauts, his wife, Jill, and several friends, successfully started the Boise chapter of Extra Hands in 2004.

"With bringing in Extra Hands to the Valley, ALS gets the increased publicity that the disease sorely needs," Harris said.

Through the support organization, high school and college students volunteer to help people with ALS and their families by doing chores and running errands, or by providing company for the homebound. Students also organize and participate in public awareness events designed to teach their peers and people in their communities about the disease.

"We strongly believe that people with ALS can teach student volunteers lifelong lessons of compassion, courage and service," Harris said.

Danny Barrett, a recent Boise State University graduate, volunteers weekly with Extra Hands. Unsure of what to expect, he found it to be a selfless job.

"I was most surprised by being comfortable with the family, and knowing that you make a difference at the end of the day for someone else," Barrett said.

Barrett not only volunteers with Extra Hands, but last October put together a team to run the Portland Marathon for Extra Hands for ALS. The team raised $900.

Sara Barsness, assistant program manager for the Boise chapter, said just knowing someone who has ALS has given her a different sense of compassion.

"It helps you to realize no matter what they're going through, that they're still people and they have the same concerns about life. It makes ALS less scary and it stretches you beyond what you thought you can do," Barsness said.

Comments from Joe Harris: Incredible article Kristi, thank you. The MDA has many outstanding and needed programs that benefit people with ALS and their families. Those programs include money for a communication device and a wheelchair, money for health services, a support group, loan closet and now an ALS clinic.

ALS can strike anyone

FOCUS ON ALS
BY VICTORIA SIEGEL, SPECIAL TO THE JEWISH LIGHT

A very small percentage of individuals get amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, but it affects everyone around them.

"When we found out seven years ago he had ALS, life turned into a pile of ash for me," Robert "Bob" Orchard, father of ALS patient Jack Orchard, said. "This has been agony. Absolute agony."

Marla Scissors, a recently-diagnosed ALS patient, said that while only 5,000 people are diagnosed each year, the number of people who are affected by the disease is significant. According to the ALS Association, around 30,000 people are battling the illness at any given time.

ALS is a disease of the motor neurons, muscle-controlling nerve cells in the brain and spinal cord that control voluntary muscle movement, says MDA's Web site.

"When nerve cells in the brain stem and spinal column die they can't send messages to muscles," said Debbie King, MDA ALS Division health care services coordinator for the St. Louis area. "The muscles get weaker and atrophy." Eventually the ALS patient is paralyzed. "You're a prisoner in your own body," King said. The typical patient dies, usually from respiratory complications, between three and five years after diagnosis.

Currently experts have no cure or an answer as to why people get ALS. However, through studies, researchers have been able to make some progress in enhancing quality of life.

"With a feeding tube and breathing assistance we have a number of people who have lived several years," King said. In addition, thanks to advances in technology, ALS patients can use equipment to help them communicate. Orchard is using an Eyegaze Communication System. A camera at the base of a computer screen recognizes Orchard's eye movements as he scans a keyboard on the screen thus allowing him to type. By using the voice command option, the machine can speak the words Orchard has typed.

The Center for Advanced Medicine at the Washington University School of Medicine is one of the 225 hospital-affiliated MDA clinics in the United States. At the clinic the doctors are specialists in neuromuscular diseases and through Washington University, MDA ALS division has ongoing programs to educate other physicians about ALS. This educational component of MDA helps inform physicians about signs to look for when a patient first comes to them with various symptoms. The clinic also includes physical therapists, dieticians and mobility specialists as well as support groups.

It can take a while to get a diagnosis of ALS. For Orchard, it took 18 months; for Scissors a few months. The first symptoms vary from person to person. For Scissors, she noticed a weakness in her left leg or ankle. "I would be walking and all of a sudden my heel would turn out." In Orchard's case, it began with trouble gripping items with his left hand.

While King admits it can be frustrating to watch people die, she believes that medical trials are the hope for the future. "It can be difficult doing this job, but it gives me an opportunity to reach out for MDA," King said. "And, through my work with ALS patients and families, I've learned more about living than dying. People are strong and a lot of times they surprise themselves."

Even With ALS, He Thrives

By Harry Jackson Jr.
ST. LOUIS POST-DISPATCH
Click here to see a video about Jack Orchard

Jack Orchard speaks for himself even though he can't talk.

He has written a book, even though he can't type.

Six years ago, Orchard was a robust, high-energy entrepreneur. Now, he can't move yet remains upbeat, even optimistic.

Orchard is in the last stages of ALS, amyotrophic lateral sclerosis, often known as Lou Gehrig's disease. He breaths through a trachea tube and expects to die within the next year or so. Frozen in his chair, he spends nearly all his waking hours in his study where a wall is covered with photos to remind him of some great times.

In the photos, he's climbing Mount Blanc in France; tumbling while skydiving; sitting as a preschool child for a family portrait with his parents and three siblings. In a corner is the picture of a great and loyal dog named Ike. In the center and on his desk, he's getting a kiss on the cheek from his girlfriend, Kristen Williams.

EYE COMMUNICATION

He speaks through Eyegaze, a special computer that tracks his eye movement as he looks at characters on a screen. The computer then reads what he types and speaks for him.

Orchard works at a rate of a quarter-second per character, the fastest setting on the machine. He has developed such a sense of focus that he used the machine to write a book, "Extra Hands - Grasping for a Meaningful Life."

"Sometimes I shudder at what life must have been like for people with ALS 20 years ago before this sort of technology was available," he said. "My work keeps me focused and sane. So it's crucial for me to stay productive every day."

As for Eyegaze and its computer-generated voice, he said, "Actually, I wish it wasn't such a geek."

Eyegaze also is connected to some of the electronics in his room, the TV, radio, stereo, a laptop and desktop computer.

Everyone around him - his caregivers, his girlfriend, his father, Robert Orchard - sees his book as an amazing feat. Everyone but him.

THE STRESS OF ALS

The 183-page book came about to help raise money for his Extra Hands Foundation. It has sold about 500 copies.

He founded the charity to pair high school and college student helpers with people living with ALS because it can be a lonely disease.

About 80 percent of people who contract the disorder end up divorced. "It's as tough on (spouses) as it is on the people who have it," said Robert Orchard, 86. "Just think about it. When you have this disease, someone has to do everything for you. For my son to keep the attitude he has ... I'm just so proud of him."

In the book, Orchard tells of how the disorder ate away at his marriage as much as it did him. Eventually, she surrendered and Jack understood.

A NEW RELATIONSHIP

About two years ago, at a planning session for his foundation, Williams, who is a triathlete, showed up with a friend wanting to stage athletic events to raise money.

What followed was the fodder for a popular chick flick.

Orchard could still smile and speak. He and Williams, 27, worked closely for a time, then one day he asked her if she'd like to join him for "the best hot chocolate in the city."

"We'd sit outside of Kaldi's and talk for hours," she said. "He totally fascinated me with stories of his life and how he'd managed to take something that would crush the spirit of so many people and turn it into something so inspiring.

"I wish I could say I had a choice to fall in love with him. Anyone who knows Jack will love him, and I'm lucky he let me into his life."

THE STRUGGLE

Orchard's memoir tracks him from the mid-1980s. Then, he was a high-energy, fun-loving entrepreneur and financial consultant who helped modernize Russian financial institutions, all while attending Stanford University and working on his MBA.

His first hint that he had a problem was when he noticed his wrists weakening when he played golf. This continued for several months.

He tells how doctors began the diagnosis eliminating everything else until ALS was the only explanation for his condition.

He tells of the disease progressing to the degree that he had to hold his hand still and move his face to shave.

He tells of being hassled by a police officer who refused to believe that he couldn't move his arms.

The book shows subtle humor. When his wife leaves and takes his dog, Ike, he writes two pages about how much he misses Ike.

But most of all, he tells the story of the inner struggle to decide what to do upon learning of his mortality.

Powerful passages explain how he felt when he realized he wouldn't outlive his father, and how living in the moment and in the day was so much more important than lamenting the lack of a future.

"In essence, the book explains how my life could have been meaningless, or it could end with something impactful," he said. "And in the end, I found a way to make my life seem rich and righteous through my work on my charity, Extra Hands."

So much left to do

ALS victim starts project to help teens and patients

By Erin Taylor
Tuesday, November 6, 2007 10:24 PM CST

At 33, Jack Orchard found his wrists were beginning to affect his golf game.

The former John Burroughs School football team co-captain was living in San Francisco, working as a financial consultant. He had recently returned from Moscow, where he and several business partners opened the first private investment bank there. Life was looking good for the married Harvard University graduate with the impressive resume.

Orchard had experienced neurological problems previously; a right foot that went mysteriously limp for three days, his shoulder muscles seizing when giving his wife a hug. When Orchard noticed his wrist muscles were inexplicably weak, he called his father in Frontenac for advice.

Bob Orchard told his son to come home to see a neurologist he knew. Tests ruled out multiple sclerosis and other neurological diseases. But the more other conditions ruled out, the more it became clear; Jack was suffering from the beginning stages of amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's Disease.

Now 40, Orchard spends his days running his "Extra Hands for ALS" charity from his Richmond Heights home. The disease has confined him to a wheelchair.

Last year Orchard underwent a tracheotomy, which has prevented him from speaking. He communicates by using an Eye Tracker, a machine hooked up to a computer monitor. The eye tracker senses when Orchard looks at a letter or number on the screen. The machine is Orchard's main means of communication.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The ALS Association estimates life expectancy for those with ALS to average two to five years from the time after diagnosis. As many as 30,000 Americans are living with the disease at any given time.

As in Orchard's case, ALS is diagnosed often by ruling out other diseases that mimic the symptoms of ALS. Onset symptoms include muscle weakness and twitching and can progress to include difficulty in breathing and swallowing and paralysis. There is no known cure.

Life has changed dramatically for Orchard since his diagnosis. He moved back to St. Louis, went through a divorce and started his charity, which has raised $3 million in the last five years. Orchard's "Extra Hands for ALS" charity places teens in the homes of ALS individuals for two hours each week to help with chores, provide companionship and raise public awareness.

"It's what I like to call a charitable two for the price of one because it is as much a youth development and leadership program as a it is a patient service," Orchard said through the machine.

He said the organization gives a reason to continue.

"It was an ugly realization when I was diagnosed that if I had dropped dead right then, my life would have felt meaningless and self-centered," he said. "So when I finally emerged from the depression I had buried myself in, I realized that if I could use my gifts, at least those ALS wouldn't strip away, to improve the lives of others, then I could die with the knowledge that I had spent my time purposefully and meaningfully."

One afternoon a few years ago, a woman stopped by Orchard's home to see if she could help organize a marathon for "Extra Hands." The two fell in love and remain a couple.

"I think its extraordinary how she could fall for a guy like me on borrowed time and unable to put my arms around her, but that's what makes her so wonderful," Orchard said.

Orchard recently released a memoir of his life before and after his diagnosis. "Extra Hands: Grasping for a Meaningful Life," was written entirely through Orchard's use of the Eye Tracker.

In addition to raising funds for the charity, Orchard hopes the book acts as a roadmap "for others lost in similarly harsh territory."

"I want them to see that they too can find a measure of the peace I've found," he said. "It's not a matter of spirituality, because I think the work I do could be fulfilling for anyone regardless of their beliefs. You might call it a humanist approach to life that we can all get the best in life by bringing out the strengths and talents and goodness of others."

Bob Orchard calls his son his hero but said he isn't surprised by Jack's attitude.

"He's always been an achiever," Bob said.

Jack spends most of his time working out of the living room of his home, surrounded by dozens of family photographs hanging on the walls.

In his book, Orchard writes: "If it's true that when you die, your life flashes before you, this room will be an excellent substitute. When my time comes, I would like to be surrounded, one way or another, by the people who have meant so much to me, who have shaped my life, the people to whom I connected, to whom I am responsible, and on whom I rely.

"But there is so much left to do; so for now, back to work."

To learn more about "Extra Hands for ALS," or to purchase a copy of Orchard's book "Grasping for a Meaningful Life," visit www.extrahands.org or www.jackorchard.org.

Chappaqua teen starts local ALS helpers chapter

by Swapna Venugopal Ramaswamy
Northern Westchester Express

CHAPPAQUA - Nine years ago, when Julia Zinberg's 37-year-old aunt was diagnosed with amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, she was too young to know what that meant.

Zinberg, 16, who will be a senior at Horace Greeley High School in the fall, is now not only educated about the nerve-wasting disease, but also is determined to make a difference in the lives of those suffering from it.

Last fall, Zinberg along with friend Scott Topel, founded a school club chapter of Extra Hands for ALS, a national non-profit volunteer service assisting people with ALS. It is the only one in Westchester County.

Extra Hands encourages high school and college students to volunteer helping families by doing their chores, running errands or just providing company for the homebound.

Scott Topel and Paige Wolff, both 16, have been visiting Margaret Leary of Yonkers once a week since January.

Leary, 71, a former third-grade teacher at St. Eugene's School in Yonkers, was found to have ALS last year.

Her movements are now highly restricted, and she manages to get out of her apartment only about three times a month. Early this year, as her condition worsened, her 40-year-old son, John, moved in with her. Her daughter, Liz, 37, lives in Pelham and visits her every night, bringing meals.

When Leary heard about the newly established chapter through her ALS support group at the Burke Rehabilitation Hospital in White Plains, she immediately signed up for the service.

So, starting in January, every Thursday after school, Topel's mother, Sherry Topel, drove the students to Leary's apartment where they would spend nearly two hours, vacuuming, cleaning the windows, organizing her bookshelves and once, even cooking.

"I am so impressed with these kids; they have such grace and willingness," said Leary in a barely audible voice. "They always do everything with a smile and say 'my pleasure' every time I ask them to do something."

For Wolff and Topel, the experience has constituted many "firsts."

"I have vacuumed the carpet before, but I have never tried to remove a stain from it, and I had never cleaned windows before," said Topel.

ALS eventually affects all muscles under voluntary control, and patients lose their strength and the ability to move arms, legs, and body.

According to the Extra Hands Web site, as many as 30,000 Americans have ALS and, an estimated 5,000 new cases are diagnosed each year in the U.S.

For Zinberg, volunteering is a way of honoring her aunt, Adele Zinberg, who is now confined to a wheelchair.

Adele Zinberg, who was a practicing gynecologist, switched fields and got a degree in psychiatry before the onset of the disease. She continues to work as a therapist three times a week in women's shelters in New York City, her mother - and full-time caregiver - by her side, writing prescriptions on her daughter's behalf.

"My aunt is so inspiring. She continues to travel the world and has a great attitude." said Zinberg.

Zinberg and her friend, Alexandra Chan, 16, have been helping a family in Elmsford since November.

"It is very rewarding. Knowing how much it means to them, touched me." said Zinberg. "It is good not to be so wrapped up in my own life and help someone else."

Teenager enjoys leadership, volunteering, science

Photo: Homedale High senior Mark Vance says volunteering with ALS patients made him want to become a doctor

By Christin Runkle - Idaho Press-Tribune

HOMEDALE — Homedale High School senior Mark Vance has wanted to be student body president for four years.

Mark said that he decided in eighth grade to run for office each year, ending in a run for student body president his junior year.

Now that he’s student body president, Mark is finding the job to be more stressful than he anticipated, especially because he and his fellow student body officers had to put together a homecoming dance in just three or four weeks.
“We managed to pull it off somehow,” he said.

Besides organizing the dance, Mark also approves fundraisers and runs student council meetings.

Mark is involved in INL Team, an academic competition, and in his school’s Science Club, of which he is vice president.

In Science Club, students take trips to “visit anything remotely to do with science,” Mark said. In the past, the club has visited the Bruneau Sand Dunes and its observatory, and members have collected reptile specimens. This year, they’ll visit Salt Lake City.

Mark is also involved in several community service organizations. In Teens Making a Difference, he has helped rake leaves, supervised needy students who were given shopping sprees to the mall, and held baby-sitting nights for local parents.

Mark also volunteers two hours a week for Extra Hands for ALS (Lou Gehrig’s Disease). He works with someone with ALS, helping them with housework or yard work.

“That may have been a little behind my decision to be a doctor,” Mark said.

This fall, Mark will major in pre-med, likely at the University of Idaho.

“I mainly really want to do something (that helps others),” Mark said. “I couldn’t stand a dead-end job where there’s no change.”

Mark thinks he’d like to become a radiologist — because of the lack of blood and because the field involves problem-solving and three-dimensional images.

Though Mark likes the more analytical pursuits, he also enjoys art and creative writing in his spare time.

Mark likes taking pictures, developing his own photos and rolling his own film.
“I like finding things people drive by every day and taking pictures from a different angle,” Mark said.

Mark has also written a number of poems, and he even started writing a novel.

Mark said the novel, which he has rewritten several times, is a realistically written fantasy book. Mark said he tries to “research the causes of everything” that happens in his story.

Right now, he’s focusing his research on the mistreatment of the mentally ill, starting several centuries ago.

Vote for Missouri's Greatest Hometown Heroes

National Vote Underway for All-Time Greatest Heroes - Five Per State - in 5th Anniversary Volvo for life Awards

Vote for Top Heroes at www.volvoforlifeawards.com; $1 Million in Financial Contributions Provided; Winner Receives Volvo Car for Life

IRVINE, Calif., Jan. 11 /PRNewswire/ -- Who would you give a Volvo to? How about Sandra Irle of Warrensburg who worked for more than six years to restore and re-imagine Blind Boone Park? Or Denise Brock of Moscow Mills, who helps plant workers who developed cancer after working at Mallinckrodt Chemical Works? Or Steve Flick of Kingsville, who established the Western Johnson County Medical Clinic to provide affordable and accessible health care to people in his rural community?

These are just three of the five extraordinary Missouri heroes named as semi-finalists in the 5th Anniversary Volvo for life Awards -- Volvo's annual search for hometown heroes across America. This year, in honor of the Awards' 5th anniversary, Volvo selected the top five heroes from every state in America and is asking the American public to visit www.volvoforlifeawards.com to vote for their favorites now through February 4, 2007.

Who in Missouri would you give a Volvo to? Representing Missouri in this year's Volvo for life Awards are:

* Denise Brock of Moscow Mills, has been dubbed the "Erin Brockovich of
Missouri," thanks to her tireless work on behalf of plant workers who
developed cancer after working at Mallinckrodt Chemical Works. A cancer
survivor herself, Brock first learned of the extent of Uranium poisoning
from the plant while in court fighting for money to cover expenses
incurred when her late father developed cancer after years of working at
the plant. Since then, Brock and her mother have been educating plant
workers and their families, as well as the community in general, about
Uranium and Beryllium poisoning. Brock also advocates for the claims of
these families.

* Farmer and Seed Company CEO, Steve Flick of Kingsville, established the
Western Johnson County Medical Clinic to provide affordable and
accessible health care to farmers, rural residents and employees of
local small businesses, who previously had to travel more than 30 miles
for medical care. Flick bought a defunct equipment store and recruited
the help of local tradesmen to build the clinic from the ground up.
Since the doors opened October 15, 2004, the full time, full service
medical clinic has helped more than 5,000 patients. A foundation since
established helps Western Johnson County Medical Clinic, as well as
other rural health care clinics in Johnson County, to address the health
care needs of rural residents.

* Sandra Irle of Warrensburg worked for more than six years to restore and
re-imagine Blind Boone Park, built in 1954 for the African-American
community during segregation. Irle recognized the importance of the
park and brought together more than 3,000 volunteers from White and
Black communities to restore the park and protect its history. Under
Irle's leadership, the trash-filled, weed-strangled space has been
transformed into a beautiful park, complete with gardens, lawns, sensory
walkways for the visually impaired and a large gazebo for musical
performances. Blind Boone Park, created in an era of exclusion and
discrimination, is now a garden of inclusion, unity and community for
all the city's citizens.

* Jack Orchard of St. Louis co-founded "Extra Hands for ALS" to help
families who suffer with Lou Gehrig's Disease (ALS), despite being an
ALS sufferer himself with only the power of his mind and the use of one
finger to operate a computer. The program provides high school and
college student volunteers the skills they need to become "friendly
visitors," helping with mail or e-mail, housecleaning, getting
groceries, doing yard work, reading aloud or simply providing company to
ALS patients. Students also participate in public awareness events,
such as organizing an ALS Awareness Day at their school or running an
information booth at a community fair. To date, hundreds of students
have worked thousands of hours all over the country for the cause.

* Dr. John Small of Hartsburg established a clinic, which employs several
other volunteer therapists and students, to provide free counseling
services to the poor and homeless. Dr. Small works for himself and
commits 20 hours (over and above his typical 40 hour work week) each
week to provide services and free clinic office space and to train
younger therapists and psychiatric nurses so they can continue this work
when he retires.

Once the public vote concludes, the top three vote getters in the categories of safety, quality of life and environment will be named finalists. Then, a panel of distinguished judges -- including Hank Aaron, Sen. Bill Bradley, Caroline Kennedy, Maya Lin, Paul Newman, Dr. Sally Ride, Val Kilmer, Eunice Kennedy Shriver and previous Volvo for life Awards top winners -- will select winners in each category. Winners receive a $50,000 charitable contribution from Volvo; remaining finalists receive a $25,000 contribution.

Volvo and members of the celebrity-judging panel will honor the winning heroes on April 5, 2007 at the 42nd St. Cipriani during the 5th Annual Volvo for life Awards Ceremony. There, Volvo will reveal which of the three top heroes is also the Grand Award winner of a Volvo vehicle every three years for the rest of his or her life.

"Over the past five years the Volvo for life Awards initiative has received more than 15,000 hero nominations," said Anne Belec, president and chief executive officer of Volvo Cars of North America. "All of these heroes demonstrate incredible conscience, care and character. Having the public help us select the winning heroes is a truly exciting -- and democratic -- addition to this year's program."

To learn more, or to vote for your favorite hero, visit www.volvoforlifeawards.com. A Spanish version of the site can also be accessed at this address.

Students Offer ‘Extra Hands’ for ALS

By Sarah McClellan-Brandt, Contributing Writer, The Colleyville Courier

Daniel Basco, a senior at Colleyville Heritage High School, has volunteered in nursing homes and retirement centers, but was looking for a different volunteer opportunity when he found an organization that allowed him to use his computer skills to help others.

Basco volunteers with Extra Hands for ALS, a charity that helps people with amyotrophic lateral sclerosis, better known as Lou Gehrig’s Disease. He helps Brian Welch, a Colleyville man who has the disease, to use a computer program that helps him communicate with people.

“I’m helping him program the software to make it easier to use,” Basco said. “The only things he can move are his head and his eyes and he doesn’t speak, which is where the program comes in.”

Basco, along with other students in the area, gets school credit for volunteering under the Scholar Ambassador program and for the National Honor Society, but he says he volunteers for other reasons.

“It is different and challenging,” he said. “And my great-uncle died of ALS.”

Linda Allen, program manager of the organization’s Dallas-Fort Worth branch, said about 80 students in the Metroplex volunteer. She targets student volunteers because they are the next generation of people who can help garner awareness of the disease.

“They’re going to be the next doctors, lawyers and congressmen,” she said. “By getting them involved at this stage of their lives, we believe they will take the message in a direction that will only benefit the ALS community for years to come.”

Lauren McMahon, also a senior at Colleyville Heritage, was so impressed with the organization after volunteering to help a woman with the disease last year that she persuaded the junior class council to put on the 5K Fun Run for ALS for its outreach program for the spring semester. She and Mariam Khedery, also a senior, helped the woman with chores around her house and kept her company for two to three hours per week.

“Knowing that I was helping someone was awesome,” McMahon said. “To know that us being there had an effect on her and was helping her out — it was just the smallest things that I do at my own house every day. We didn’t know that washing the dishes could help someone out that much.”

Patt Walker, the faculty sponsor for the class council of the Class of 2007, which put on the run last year and plans to do it again this year, said community projects are extremely important to student development.

“‘They live in a bubble over here,” she said. “They’re fortunate, they live in a very affluent area and go to a school highly ranked nationally and sometimes just don’t have exposure to what life is like for someone less fortunate. A disease where the mind is sharp but the body quits is, for a teenager, hard to grasp. Their outpouring of love was awesome to watch.”

Walker said the kids worked countless hours to make the 5K run happen. They designed fliers and distributed them all over the district, contacted the police to help with the route, registered runners and got permission from the city and the administration in addition to the other tactical work that comes with putting on an event of that nature.

But the biggest success, she said, was helping grow the awareness of the disease within the school and the community. More than 300 people showed up to run the March 25th race, which garnered $2,000 in donations for the organization. Allen said the money went to a research fund for the disease.

“It turns out we’re the first high school to put on an event of this caliber for ALS,” she said. “One of the founders of Extra Hands even flew in from New Jersey to participate.”

The date for this year’s event hasn’t been set yet, but Walker said she expects even greater success. When the Class of 2007 graduates at the end of this school year, Walker hopes that the freshman class will take over the race as their own project in the coming years.

“The school helping us put a face on this disease is very important,” Allen said. “And these kids go away with life lessons they may never get otherwise by being involved with a patient and learning about the disease. The students paired with a family come away with compassion and an understanding of people with disabilities.”

The class that gave back

Colleyville: Heritage juniors raise money for more than the prom

By VERONICA VILLEGAS / Special Contributor to The Dallas Morning News

Like every class that graduates from Colleyville Heritage High School, the class of '07 is responsible for paying the costs associated with throwing its senior prom.

What is different for the class of '07 is that the student council has decided to put its fundraising skills to use for others.

Image: Brianne Bosco (left) and Lauren McMahon get ready for the 5K run. Lauren suggested helping the ALS charity.

"This class is very unique," said Patt Walker, faculty sponsor for the junior class student council. "Every single fundraiser they do is to give something back to the community."

That commitment continues this weekend when the junior class holds a 5K run benefiting Extra Hands for ALS – a nonprofit agency that provides services for people with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

"We just want to make a difference," said Brianne Bosco, 16, treasurer for the junior class student council. "We'd like to be remembered as the class that gave back."

The students hope to raise about $5,000 for Extra Hands for ALS that will be earmarked for research. There is no entrance fee for the run, which begins at Colleyville Heritage at 9 a.m. Saturday, but participants donating at least $20 will receive a free T-shirt.

The junior class student council decided to take on the project last fall after vice president Lauren McMahon told her classmates about her volunteer work with the group.

"Meeting and getting to know these people that have Lou Gehrig's disease makes you realize how fortunate you are and that you can do something to make their life better," the 16-year-old junior from Euless said. "When I started telling others about it, they wanted to do something to help, too."

Linda Allen, program manager for the local chapter of Extra Hands for ALS, said the students have gone to great lengths to make sure the event is a success.

"I knew they would get something done, but I never imagined it would be to this extent," she said. "They have such incredible organization and leadership qualities, and they've done just a terrific job."

Lauren said knowing that all their hard work – communicating with city officials to plan the route and persuading local businesses to sponsor the event – is worth much more than just raising money for their senior prom.

"We know we can raise the money we need for that, so why not just put in a little more effort and do something to help out the community," she said. "Plus, we enjoy doing it."

Ms. Allen said she still can't believe the students' can-do spirit.

"It's just simply amazing that these kids are so committed and dedicated to doing something to benefit others," she said. "It grabs your heart."

Sufferers of Lou Gehrig's disease, their helpers benefit one another

by JAN JARVIS;
Copyright 2005 Fort Worth Star-Telegram

Six months ago, Wayne Strianese was a hard-driven computer guru who let little stand in his way.

Today, as he sits in his wheelchair, unable to lift his arms or breathe without assistance, Strianese can't help but be mad.

Mad that he will never be a grandfather or see his 10-year-old son grow up. Furious that at 40, his body has turned on him and robbed him of the rest of his life. Frustrated that the bureaucracy makes it so difficult to get the equipment or help he needs.

Most of all, he is angry that he is the 26th person in his family to be diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The fatal neurological disease has rampaged through his family, killing cousins, aunts and his mother.

"I'm mad that I had to be the next one," he said.

Yet amid the frustration Strianese has found a reason to be grateful.

Adam Clark, a volunteer with Extra Hands for ALS, has started visiting the family each week, doing the things that Strianese can no longer do himself. During a recent visit, Clark mowed the yard, trimmed the bushes and strung Christmas lights at the family's home in Burleson.

The Strianeses appreciate the help.

"Adam is a good guy with the right attitude," Wayne Strianese said. "It's nice to see young people take their spare time to do something like this."

Extra Hands for ALS was founded in 2002 by Jack Orchard, who was diagnosed with the disease when he was 34. The organization matches high school and college students with families dealing with ALS. Volunteers agree to spend two hours a week with the family throughout the school year. A mentor also works with the volunteers, who perform tasks ranging from cleaning house to shopping for groceries.

The group started in St. Louis and has spread to cities across the country. In May, Linda Allen of Arlington became program manager for the Dallas-Fort Worth area. She decided to start the area organization after her husband died in 2002.

Since then, about 50 students have volunteered to help 14 area families, including the Strianeses. Although the families benefit from the extra help, the hope is that the students will also gain from the experience, Allen said.

"Families are allowing them to come into their home, where they learn about being compassionate and being empathetic," she said. "They learn firsthand what it is like to live with a terminal illness."

Watching someone who was once active and full of life deteriorate is painful for caregivers, said Allen, who cared for her husband during his illness.

"You don't have time to get angry during the process because you're so busy doing things," she said. "What the family goes through is so horrific."

The Strianeses said they appreciate Clark's help and see benefits beyond what he has done around their house.

"I'm hoping he will inspire my kids to help others," said Cara Strianese, who quit her job to be her husband's full-time caregiver.

Clark, a student at the University of Texas at Arlington, said he has learned a lot from the Strianeses.

"It was a shock to me when I learned how fast this disease travels," he said.

Although people with ALS typically live three to five years, Strianese has an aggressive form. Most of his relatives who were afflicted died within 13 months. His cousin, who died in May, lived the longest at 15 months.

The disease has progressed so fast in Strianese that the family has hardly had time to plan for his equipment needs or to fight for insurance coverage.

While working out at the gym this summer, Strianese tore a calf muscle. The weakness in his leg worsened, as did his fear that he would meet the same fate as others in his family.

By late July, he was unable to walk without a cane. A neurologist confirmed what he already suspected. By September, he needed a wheelchair. Two weeks ago, he lost the use of his arms.

"He can control his wheelchair, but he can't raise his arm to scratch his nose," Cara Strianese said.

The disease tends to reach a plateau and slow down, but then speed up again, she said. He is already having difficulty breathing without help. Later, Strianese said, he will be unable to speak. He has started using a computer that recognizes eye movement.

"This is a bad disease because it does not affect your mind," he said, "I'm still the same person I was before I was sick. I still dream at night, and when I do I'm walking and doing all the things I used to do."

ONLINE: www.extrahands.org

IN THE KNOW

Extra Hands for ALS

Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is a fatal neurological disorder that causes muscle weakness, wasting and paralysis. About 5,600 people in the United States are diagnosed with ALS each year. Life expectancy is three to five years. Extra Hands for ALS helps people with the illness and introduces young people to community service.

Student volunteers are trained and matched with an adult mentor and an ALS family.

Volunteers visit their ALS family once a week during the school year.

Volunteers help with tasks such as mowing, cleaning or shopping.

For more information, go to www.extrahands.org or call Linda Allen at (817) 521-6290.

When every hand counts

Volunteers help ALS patient Adriana Pitt with the tasks she can no longer do.

By BLYTHE BERNHARD
The Orange County Register

HUNTINGTON BEACH – Adriana Pitt reorganized her craft room three years ago to make way for a hospital bed and medical equipment. She painted a quote on the wall in her best handwriting: "The truest measure of a life is not its length, but the fullness in which it is lived."

Pitt, 52, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in 2001. She can no longer walk, talk or work on her beloved scrapbooks. She spends her days in bed in the downstairs craft room, overseeing two volunteers who are finishing the photo albums.

"I feel I need to leave a history for my kids. ... Their helping me organize is such a relief for me," Pitt said by typing onto a computer. "It has brought them into my world."

Volunteers Teresa Garcia and Brenda Waterman, both 22, see photos of Pitt on her wedding day. She is beaming at her first husband, Jerry. The birth of a daughter, then a son. The grieving widow, who lost her husband to cancer at 26. Birthdays, holidays, vacations and a second wedding.

Garcia and Waterman volunteer through Extra Hands for ALS, a national group that pairs high school and college students with ALS patients to provide companionship and help around the house. There are 150 known patients with ALS in Orange County and 30 volunteers placed with families.

ALS attacks nerve cells and gradually robs patients of their voluntary muscle control. First patients lose their mobility. Then their voices. And finally, their breathing. But they never lose their mental capacity. Most patients die, usually of respiratory failure, within three to five years of diagnosis.

"ALS is devastating," her husband, Jack Pitt, said. "Her mind is sharp as ever, but I see a person that's a prisoner in their own body."

Fresh flowers fill Pitt's room. The onetime florist had to sell her Seal Beach shop when the disease progressed. The couple had been looking forward to a stress-free retirement, but the volunteers offer the family a measure of peace, Jack Pitt said.

Garcia and Waterman visit Pitt for two hours each Thursday to walk the dogs, take out the garbage and sweep the floors. But mostly, as girls will do, they talk and giggle.

"We talk a lot about life and what they are up to. We have bonded," Pitt typed.

The young women, both UC Irvine students, love to joke with Pitt. One day, they say, they're going to spike her feeding tube with margaritas. They tease her about her poor spelling and scoff at her disease. When Pitt laughs, she throws her head back and lets out a high-pitched gasp.

"Sometimes I forget that we're not orally communicating," Garcia said. "I forget about that stupid machine that's helping her breathe."

The students have been helping Pitt for a year and move comfortably through the house, skimming the backyard pool or watering the flowers out front. They always end up at the foot of Pitt's bed to chat. It's not bittersweet to watch the vibrant girls with their lives ahead of them, Pitt said.

"It's just so wonderful to be around them. They are so full of life! Keeps me young at heart," she typed.

Although she knows it's coming, Garcia said she isn't afraid of her friend's death. She sees how Pitt is loved by her children, friends and husband. Garcia has learned from Pitt to live simply, and she wants to work in hospice care.

A mentor provided by Extra Hands helps the volunteers and the patients' families with their questions and grief - not that Pitt plans to go anytime soon.

"I am too nosy and want to see everything that goes on!" she typed, and smiled.

Pitt said she has no regrets about her life. While she gets frustrated with the disease, she would rather "cope than be miserable." Still, if she could have her body back for just one day, she would be a professional dancer on Broadway.

"I just love music and moving to it," she typed.

CBS Early Show: American Hero

©MMV, CBS Broadcasting Inc. All Rights Reserved.

To see this segment as it appeared on the CBS Early Show, click here for the CBS Early Show website and then click on "Hero Provides Extra Hands" at the top of the article.

There's a chance that the American Hero whose story you are about to read won't be around this time next year. But that doesn't seem to worry him at all, The Early Show co-anchor Julie Chen reports.

If you think you know how people with life-threatening illnesses are supposed to act, then you've never met Jack Orchard.

He may not look especially heroic. But the frail man in the wheelchair has the courage to change the world, even as his own world comes apart.

Orchard has the kind of life story you see in the movies: A child born into a loving family, a teen-age football player who hit the books as hard as he hit the opposing line.

Orchard graduated from Harvard, and eventually found himself in Moscow and in business.

His wife, Eve Tetzlaff, says, "Jack was basically your typical type-A, hard-charging, finance guy."

Life was good, and about to get better.

Tetzlaff says, "We met living in Moscow, and he had co-founded with a number of partners a financial institution that's still one of the biggest."

And if there was such a thing as a perfect match, Orchard and Tetzlaff might qualify: Both were young, educated and, after their wedding in 2000, poised to begin an amazing life journey together. But it would not be anything like they expected.

Not long after they were married, Orchard began having unexplained muscle cramps and weakness. Within six months, his doctors began to suspect ALS, also known as Lou Gehrig's disease.

People stricken with ALS lose control of their muscles and, in time, their abilities to walk, talk and breathe. There is no known cure. A diagnosis of ALS is, in effect, a death sentence.

Tetzlaff says, "They literally told us go home and get your papers in order. There's nothing you can do. And we had just gotten married, we were in our early 30s, and we just could not take that as the fact of our lives."

Orchard was told that there was nothing he could do about it. But he did do something about it.

Orchard says, "When the doctor said there was nothing I could do, I thought, 'You wanna bet?'"

Instead of spending the rest of his days watching himself die, Orchard had an idea that would help ALS patients everywhere.

In a way, ALS cripples the families, too, because ALS victims need constant care, leaving little time for anything else.

Teresa Ribble, a wife of an ALS victim, says, "I get angry because it's just nonstop. It's: 'I need this; I need this; I need this,' which he does."

Ribble adds, "Honestly, I do good to open my mail and pay my bills on time every week, honest to God."

Orchard says he saw that families really needed an extra set of hands, and a great idea was born.

Jack created Extra Hands for ALS. His student volunteers visit ALS families every week to do whatever's needed.

Tetzlaff says, "The whole idea just blossomed."

Ribble says, "They're just awesome. They accomplish more in three hours than I could in a weekend. I can tell you that."

The families get the help they desperately need, and the kids get the chance to make a huge difference in someone's life.

Volunteer Zach Selke says, "I do enjoy it. I think it's important for everyone to give their time. I mean, why not? Instead of watching two hours of TV, I'm helping out a family who needs it.

Orchard is hopeful that his student volunteers will help raise awareness that might someday lead to a cure.

"They are like angels," Ribble says, "It's just amazing that they will come out here and do that for us."

For his work with Extra Hands, Orchard was a finalist in the Volvo For Life Awards, with Tetzlaff, as always, close by his side.

Tetzlaff says, "One of the strangest things is that our marriage has really been like a threesome, Jack and me and ALS. And I think it would have been a lot more fun, just the two of us.

"It's hard to say what I miss. You just kind of take life for what it brings you and live it."

Jack Orchard knows only too well what the days ahead will bring. But on awards night in March, Orchard's face lit up New York's Times Square: the symbol of an idea that will live long after he is gone.

Sharing their voices

By Michele DeFazio/ News Correspondent, Stoughton Journal

Seventy-five year old George Grasso faithfully visits his younger brother Salvatore, 59, three times each week at the Sinai Hospital in Stoughton. For the past six years, Salvatore's only communication has been through the assistance of an eye scan, but that doesn't keep George and his brother from understanding each other.

Salvatore suffers from amyotrophic lateral sclerosis, commonly known as Lou Gerig's disease. ALS is a disorder of the central nervous system which eventually leaves its victims paralyzed although their mind remains unaffected. George's symptoms have significantly progressed since his diagnosis 11 years ago leaving him with only limited facial movement.

In addition to his brother, Salvatore receives regular visits from family and friends. But on Monday evenings, his room is filled with song.

Each week, Leah Bloom of Stoughton and Laura Swearingen of Winchester visit with Salvatore. Sometimes they talk, but they primarily sing.

"We go in for like an hour and sing to him from either voice or musical theatre," Bloom said.

Bloom and Swearingen participate in the Extra Hands for ALS Program. Through Extra Hands, high school and college students volunteer their time to assist a person afflicted with ALS or their families. Their support can range from helping with small household projects, running errands or providing comfort and company to their patient.

"Our program is as much for young adult volunteers as it is for patients and families," said Corinne Lippie, program manager for the greater Boston area. "We see this program as helping to shape the next generation of leaders that is committed to giving back to their communities and making a difference in other people's lives."

The philanthropic organization was launched three years ago by Jack Orchard when he was diagnosed with ALS at the age of 33. Orchard developed two programs, Extra Hands and the Jack Orchard ALS Foundation. The foundation was formed to generate revenue for research and fund its sister company to assist effected patients with the disease, provide education on ALS and introduce the concept of community service to young adults.

"The rational was for the foundation to fund research, but in the meantime helping people cope with it [ALS]," Lippie said.

Students work in pairs volunteering their time one hour per week and are monitored by an Extra Hands adult mentor. They are encouraged to commit through their academic year, however, many extend their allegiance once they are involved.

"What we find is that many, almost all of the students, go beyond the year because they develop close personal relationships with the patient and their families," Lippie said.

Bloom, a junior at Stoughton High School, began visiting Salvatore last May and said she plans on continuing her visits for at least another year.

"I'm going to do it until I go to college because I like going and one night a week does not seem like a huge thing at all," Bloom said.

Although Salvatore is unable to verbally communicate, his brother feels these visits provide an escape from a disease that has left him physically vulnerable.

"They improve his quality of life for that hour," George said. "I'm sure he appreciates it."

Throughout their 10-month relationship, Bloom has observed a big difference in Salvatore's spirit. Although his communication is limited, she has grown to learn and understand a lot about her new friend.

"I've noticed since I've been coming he's been smiling more," Bloom said.

While this arrangement appears to liven Salvatore's day, this experience has also made a significant impression on Bloom's knowledge about the disease and the rewards of community service.

"The first time I saw community service I thought it would be something to do to get into college, but I continue because it makes me feel better about myself knowing I can impact someone's life," Bloom said. "It's such a small thing for me but I think it has such a big impact on his life."

Extra Hands for ALS continues to seek out volunteers for its program and educate the adult community on the devastating effects on the patients and their families. A fundraiser will be held on Sunday, April 24 at the Pierce House at 17 Weston Road in Lincoln for a brunch from noon to 2 p.m.. The cost is $30 per person. For more information on the fundraiser or the Extra Hands for ALS program, contact Corinne at Corinne@extrahand.org.

Volunteering with voices

By Christopher Rocchio, The Winchester Star

Jill Kinton and Jenna Weiner, both Winchester High School seniors, arrived at Steven Lewis' home on Mount Vernon Street on a Monday evening early in spring. The three discussed what each did since their last meeting a week ago, mentioning how "senioritis" has set in, as well as the pieces the two girls have been working on as captains of the WHS Octets. Eventually, talk turns to the Boston Red Sox and the home opener the team just finished playing after players received their World Series rings.

After catching up, Kinton and Weiner began singing for Lewis, starting with one of his favorites, "In the Gloaming." Before long, both are singing "Down to the River," a number from the "Oh Brother Where Art Thou?" soundtrack, and Lewis can't help but join in.

"Now that I'm less able to sing, I listen a lot better too," he said.

Lewis, a resident of Winchester since 1980, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in September 1998. Sometimes called Lou Gehrig's disease, it is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles. Because of this, Lewis is confined to a motorized wheelchair and has very limited movement in both his lower and upper body. He still speaks clearly, however.

He said life expectancy for those diagnosed with ALS is between two and five years.

"It makes me an unusual case because I've had it for six-and-a-half years," he said.

A couple of months ago, he was introduced to Kinton and Weiner through Extra Hands for ALS, a program where high school and college students volunteer weekly to assist people with ALS and their families. Once a week, a Northeastern graduate visits Lewis and does yard work, goes to the library with him and helps on the computer. This allows time for his wife Martha to run errands or go for a walk.

While Kinton and Weiner could also perform these day-to-day household activities, they offer something much more valuable to Lewis during their visit - their ability to sing.

Kinton said they were informed by Octets' director Lynne Rahmeier that Extra Hands for ALS was looking for volunteers at the beginning of the year. At the time, the girls were eager to volunteer with the program, but had no idea it would involve their vocal talents. Once they met with Lewis, it was clear the three were a match. Before he was diagnosed with ALS, Lewis said he used to sing with the Spectrum Singers - a Cambridge-based music group. Now he revels in the opportunity of hearing Kinton and Weiner serenade him with the latest Octets' number, or one of their own.

"They're a great mood lift for me," he said.

Kinton said the past few months have been inspiring for both her and Weiner. Both girls have fun singing with Lewis, and say it's great they've been able to share that talent. Also, the three often talk about what music they've been listening to recently, and it's not uncommon to swap CDs before their Monday night session is complete.

"I feel like my life has been enriched just knowing Steve," said Weiner.

Lewis journeyed to Winchester with his wife and four children in 1980 from the Washington, D.C. area. He said his children eventually began to graduate from high school and spread around the country, but one of his daughters still lives in town. He also has four grandkids, two of whom visit frequently from Boston.

Lewis said he originally chose to move to Winchester because of the commuter rail, which he took to the financial district in Boston every day to work at the National Parks System regional office. For 14 years he would walk to his office from the train, until he retired in 1994 after 34 years of service.

"I loved working there, but it felt like I had enough," he said.

Still managing to stay busy, Lewis is active in several areas of the community. He volunteers as a management consultant with the Executive Service Corps, a non-profit located in Boston that helps organizations with board development and strategic plans. He's also the board development committee chairman for the Winchester Seniors Association, and is on the board at the Woburn YMCA.

If that's not enough, he still works closely with the Spectrum Singers.

"That pretty much keeps me out of trouble," said Lewis.

Lewis' life has changed since he was diagnosed with ALS, but he said he receives good care from Beth Israel Hospital and organizations like Extra Hands for ALS. While helpers come to his home daily, he said his wife is his primary care giver. Martha said she also enjoys the help she receives because it allows her to leave comfortably, knowing that Steven is being taken care of.

"Extra Hands is a great supplement to home care," she said.

Extra Hands for ALS was launched in 2002 by Jack Orchard, a Harvard alumni who was diagnosed with ALS at the age of 34. Lewis had the opportunity to meet Orchard in Washington, D.C. two years ago at the ALS Advocacy Conference, and was impressed and intrigued by the program.

"I have enjoyed my experiences working with the organization very much," said Lewis.

Along with providing support and companionship for ALS patients around the country, another goal of the organization is to expand the community of people who are familiar with the disease so they can join the fight against it. Corrine Lippie, the Extra Hands for ALS program manager for the Greater Boston area, described ALS as a rare disease that approximately 30,000 people in the country have at any given time.

"It's an incredibly debilitating disease," she said.

Unfortunately, she said ALS tends to affect those between the ages of 35 and 70, or people in the middle of their lives. Many of these people have obligations to their families, occupations and communities, and eventually become paralyzed and are unable to speak. This is where Extra Hands for ALS comes in, to help provide what Lippie described as "practical support."

While the organization is a nationwide program, it is currently in only seven regions, including the Greater Boston area. Along with Kinton and Weiner, two other Winchester residents also volunteer with the program. Laura Swearingen volunteers with a patient in a rehabilitation center in Stoughton, and is the longest tenured volunteer from Winchester. Lippie said Swearingen is incredibly committed for driving from Winchester to Stoughton once a week. The other volunteer, Caroline Foley, volunteers with a patient in Arlington.

"Through their involvement, these students are being shaped into the next generation of leaders," said Lippie. "They're also committed to making a difference in other people's lives in their own community."

Weiner described Extra Hands for ALS as a great program and said it is very rewarding for volunteers. You don't need vocal talents to help, she said, and many patients are just looking for companionship. Weiner said she has volunteered at a number of other places, including Winchester Hospital, and she finds them all uplifting. However, there's just something different about meeting with Lewis once a week.

"I made much more of a connection volunteering with Extra Hands than I did with any of my other volunteer experiences," she said.

Extra Hands for ALS will honor ALS families and student volunteers at the first annual Extra hands Spring Fling, a fund-raising event on Sunday, April 24 from noon until 2 p.m. at The Pierce House in Lincoln. For more information on the event or on how you can volunteer, visit www.extrahands.org or contact Corrine Lippie at 617-331-3014.

Extra Hands For ALS

Teens raise awareness for the disease while gaining a sense of what's important in life.

By Cartiay Fox, Ladue High

Zach Selke is many things. He's a student at John Burroughs School. He's a runner on the Cross Country team. He's a reporter for his school newspaper. And for a few hours each week he's an extra set of hands for an adult suffering from Amyotrophic Lateral Sclerosis, otherwise known as Lou Gehrig disease.

Selke and many other St. Louis area teens are part of an organization called Extra Hands for ALS, a group of young volunteers who go into the homes of ALS patients to help them with the daily tasks that their disease won't allow them to do.

Many teens from John Burroughs are involved because of Jack Orchard, the founder of the organization. Orchard, a graduate of John Burroughs, was captain of the football team in high school and went on to attend Harvard University and the Stanford Business School. But one day, in his 30s, everything changed; Orchard found out he had ALS.

In 2002 Jack Orchard and his wife founded Extra Hands for ALS. The program is designed to raise awareness and to give ALS patients some much-needed relief at home. High school and college students volunteer a few hours each week to help ALS patients by assisting with tasks, such as babysitting, walking the dog, gardening, housework or simply providing company. Students don't provide any medical or personal service to patients; they simply give “extra hands.” Volunteers work in pairs and are assigned one patient in order to develop a relationship with that individual and his or her family.

“My partner and I worked with our patient for a couple of hours each week doing chores like dusting, vacuuming and laundry,” says Emily Barks, a graduate of Lindenwood University.

Ruhan Nagra, a student at John Burroughs High, works with Orchard in his home. “I go every Friday for about two hours after school and read to Jack a lot,” Nagra says. “Oftentimes it turns into talking. I provide him with company, and we have become good friends. Now it's to the point where I feel like I'm going to a friend's house rather than doing two hours of community service.”

To get volunteers, Orchard went back to his alma mater. In a presentation to John Burroughs students, Orchard presented information on ALS, the disease's effects and his organization, Extra Hands. The presentation aroused interest in the disease and curiosity about ways to help.

“I volunteered because Jack and his wife gave a moving presentation at John Burroughs,” says Nagra.

Selke had his own reasons for joining up. “The presentation sparked my desire to be involved in Extra Hands,” he says. “However, what really pushed me to join was when one of my best friend's father was diagnosed with ALS. The disease seems off the radar to the general public, yet it has had such a grave impact on just our small school community.”

What exactly is ALS?
According to the Amyotrophic Lateral Sclerosis Association, ALS is a progressive and ultimately fatal disease in which the patient's muscles gradually weaken and deteriorate or atrophy. In most cases, ALS begins in one part of the body and spreads. The patient becomes progressively paralyzed as his or her motor neurons die off. ALS patients eventually lose their ability to move voluntary muscles and have problems breathing and swallowing, which can lead to death. There is no cure for ALS.

How can you help?
Orchard believes that the best thing the general public can do for ALS is raise awareness and funds for research. Extra Hands for ALS is a great way to educate young people and get them involved in spreading awareness. At Extra Hands, adult mentors train and serve as coaches for the student volunteers. They push students to focus on the importance of why they are a part of the program and discuss anything that may be uncomfortable for the student.

Besides committing to two hours a week, students are encouraged to promote public awareness about ALS by holding bake sales, tournaments or other events that benefit ALS. On April 11, the students will host the Greg Keller Memorial Third Annual Shoot for a Cure golf tournament. Student volunteers believe that their help benefits ALS patients and families as well as themselves.

“[Our patient] is no longer able to speak, but she always gives us a thankful smile when she sees us,” Selke says. “I believe the program has helped teach me commitment as my patient counts on me and [my partner] Susan. What Susan and I do does not directly affect our patient's health, but it does allow her children and husband to spend more time with her during this difficult time. Susan and I always feel appreciated and utilized when we visit, and we feel our work is important [for everyone involved].”

For more information about how to join Extra Hands for ALS, contact Brian Phillips or Kara Eastman at stl@extrahands.org, or sign up at www.extrahands.org.

The Will to Believe

Copyright 2005 John Burroughs School

In hopes of redoubling the JBS community’s support of Extra Hands for ALS, Ruhan Nagra '05/'06 invited the organization’s founders, Jack Orchard ’85 and his wife, Eve Tetzlaff, to assembly on Wednesday, March 9th.

Jack has ALS, amyotrophic lateral sclerosis (also called Lou Gehrig’s disease), a progressive, neurological disease that causes muscles to weaken and waste away, leading to paralysis and ultimately death. When diagnosed, he was told that “the disease is fatal and there is nothing you can do.” The Orchards begged to differ. They launched a nationwide campaign to support scientific research and relevant Federal legislation; to educate and inspire the public; and to enlist volunteer students to help ALS victims and their families with what used to be everyday tasks like mowing the lawn, opening the mail, making conversation. This last effort has evolved into an organized program called Extra Hands for ALS in which students volunteer to go into an ALS home twice a week to help however they can and volunteer twice a year for public awareness initiatives.

Jack and Eve first spoke at Burroughs in September 2002. Since then more than sixty students have been trained to be Extra Hands. The Orchards returned to assembly in September 2003 when Jack received the 2003 Outstanding Alumnus Award along with Chris Hobler ’83 who recently lost his battle with ALS.

On March 9th they showed a video which -- through many voices -- described the disease, the Orchards’ response, and the volunteer opportunities for “really making a difference in someone’s life.” The video can be accessed at www.extrahands.org.

Ruhan then described her personal experience as a volunteer. “Two and a half years ago…I was assigned to work with Jack and Eve each week, and since then, they’ve become two of my closest friends. I confide in them; I ask them for advice. I’m supposed to read to Jack for a couple of hours every Friday, but what usually happens is that I read about a page before we just start talking….Pretty soon I’m engrossed in conversation with a person who has impacted my life so heavily. When Jack was presented with the Outstanding Alumnus Award, he gave an incredible speech about having the courage to pursue something outside your comfort zone and about having the will to believe. And that’s what I’ve learned from Jack and Eve. I’ve learned to knock down the walls of my comfort zone, to believe in myself, and to turn obstacles into opportunities. My relationship with these two people has…helped me cope with my own illness in ways that I would never have imagined. [Last May Ruhan was diagnosed with level three Hodgkins Lymphoma. She underwent aggressive chemotherapy and then radiation and is now cancer-free.] So thank you, Jack and Eve, for everything you’ve done for me and for making Friday afternoon the most highly anticipated part of my week.”

Eve expressed Jack’s and her thanks for the support they’ve received from Burroughs. She spoke of Chris Hobler, who died last month. “We need to recognize him, his friendship – and take some comfort in knowing the impact Extra Hands volunteers made in his life."

She wound up assembly reading a note Jen Hobler wrote about the Hobler family's Extra Hands team a year ago -- a sentiment Eve said should be extended to all Extra Hands volunteers:

"I really can't say enough about our team. They are special, amazing young women. It is a privilege to have them in our lives. Please let them know (as I try to every week) how enormously impressed and touched by them we are....Generally these young women rock. They are part of our family. The kids love them, Chris loves them, I love them....These are all exceptional people, and I have absolutely no hesitation entrusting them with our children, which is saying A LOT. I can go upstairs and read or nap and know that the kids are perfectly safe and having a lot of fun....Thanks and gratitude to you for giving us this gift. You have made my life workable. If there was any doubt that I needed help last Fall, it's erased now. The disease progresses faster than my children are growing up. Extra Hands is an inspired program. ALS has infuriated and frustrated me; it has tried to break my spirit as it breaks my heart, but it can't ultimately win out because although our bodies can be so frail, our spirits are so strong. Love is stronger than this disease. Extra Hands is such an embodiment of love: total strangers offering their valuable time to a family flirting with despair and providing more than the literal help that is clearly so desperately needed, but the intangible, perhaps even more important life raft of love. The world is a good place filled with mostly good people. People care. That realization makes every day so, so much better."

Volunteer teams help ease burden on ALS families

Boise program's teens and mentors make a difference

by Stephanie Eddy
The Idaho Statesman

Volunteers with Extra Hands for ALS, a nationwide assistance program for those with Lou Gehrig's disease, are making a big difference in the lives of some Treasure Valley families, and they are hoping to reach many more.

A pilot version of the program began in Boise in May. High school and college student volunteers began working with adult mentors to make ALS families' lives a little easier by doing simple tasks such as household chores, running errands or just providing company for the homebound.

Joe Harris of Boise, his family and friends were instrumental in bringing the program to the Treasure Valley. Harris, who has ALS, also designed and maintains an ALS information and support Web site.

Harris is hoping to spread the word about the program in an effort to recruit more volunteers and to encourage more ALS families to participate and share their knowledge and experience with others.

He estimates there are 40 to 45 people in the Treasure Valley area who have ALS, based on a national average of 1 in 10,000 who are diagnosed with the disease.

Since the program began, about 35 volunteers have logged more than 1,000 hours of helping out nine local families.

Extra Hands for ALS will sponsor two events next year to raise money and awareness: a Jackpot Roping event April 17 at the Lonesome Dove Arena in Boise and a Western Experience event June 17 at the Bogus Creek Outfitters Western Town.

Amy Byrd, a longtime friend of the Harris family, served as a mentor during the pilot program last summer and continues to oversee two student volunteers.

"The whole experience has been pretty positive overall," Byrd said. "During the pilot study it was a challenge because people were getting used to the program, but now it's going very well overall. When you get the right students, it works for the family, for the student, and it's a good situation for everybody."

Byrd is currently working with Sara Kido, 17, a senior at Eagle High School. Kido has helped out at the home of Bill and Christine Wade of Boise for the past several months. She found out about Extra Hands through www.volunteer match.org.

"I thought it would be interesting to volunteer somewhere that I could get to know the family and do some simple things that would help the families out a great deal," Kido said. "My mentor is just the most positive lady I know, and the Wades are such nice people. It's been a very positive experience for me — I'd recommend it to anyone.

"During the summer and late fall, we watered flowers and raked the lawn — now we are doing indoor chores like window washing, vacuuming, cleaning the bird cage, walking the dog — little things they don't have time for."

As Christine's disease has progressed, she said that Extra Hands volunteers have become a useful resource and welcome means of support for herself and especially for Bill.

"The volunteers have been great," Bill said. "They've helped fill bird and squirrel feeders and occasionally run an errand for us to go to the pharmacy or grocery store. Many times I don't have time to play with the dog, and they can take the dog out for a walk.

"This program gives me an opportunity to spend more time with Christine and pay attention to her needs instead of worrying about the little things that get neglected — things that I just don't have time for anymore."

Photos

Amy Byrd, left, and Sara Kido of Eagle High School help out at the home of Bill Wade and his wife, Christine, who has ALS (Lou Gehrig's disease). As part of the Extra Hands for ALS pilot program, the mentor/teen team helps with chores, including playing with the Wades' dog and feeding their llamas. "It is nice to be able to do some community service," Byrd said.

Eagle High student Sara Kido cleans a bird cage Wednesday at the home of Bill and Christine Wade. "We just come out and do a little chores. It's a lot of fun," said Kido, a volunteer with the Extra Hands for ALS program. "To me, it is pretty easy to walk with the dog. To them it is a big help."
Photos by Koju Kimura / The Idaho Statesman

Additional Information - About ALS

Amyotrophic lateral sclerosis (ALS), sometimes known as Lou Gehrig's disease, is a rapidly progressive, fatal neurological disease that attacks the nerve cells that control voluntary muscles. As the disease progresses, the brain loses the ability to start and control voluntary movements. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs and body.

ALS does not impair a person's mind, personality, intelligence or memory.
As many as 30,000 Americans have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year, according to the ALS Association.

The disease generally strikes people 40 to 60 years old, and men are affected more often than women. In 90 to 95 percent of all ALS cases, the disease occurs randomly with no obvious associated risk factors.
How to help

The Treasure Valley branch of Extra Hands for ALS is looking for adult mentors and high school or college students to assist ALS patients.

• Adult mentors act as a liaison between the student volunteer and a client by scheduling visits, answering questions and serving as an additional source of aid for the ALS family. Mentors usually visit the families once a month, but keep in contact with everyone on the team to ensure the success of the relationship. For more information on mentoring, visit the Extra Hands for ALS Web site.

• Student volunteers generally work in teams, helping out once a week for several hours by performing simple household chores, running errands, reading, doing yard work or visiting with a patient. A training program with ALS clinicians and social workers is provided before they are placed with an adult mentor. Students also organize and participate in ALS public awareness events designed to teach peers and others in the community about the disease.
  

First-Year Student Outreach Project

The B.U. Bridge, Week of 24 September 2004 · Vol. VIII, No. 3

As part of BU’s First-Year Student Outreach Project (FYSOP), freshmen visited Barbara and John Brown of Acton, Mass., on September 3 to help with household chores, yardwork, and cleaning. John Brown has amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease; the FYSOP trip was organized in collaboration with the Boston chapter of the social service organization Extra Hands for ALS.

Pictured (back, from left) are Julia Hart (SED’08), Patrice O’Neill (COM’08), Josh Koshar (CAS’07), Lindsay Trembulak (CAS’08), Ashley Adams (CAS’08), Josh Avroch (CAS’08), the Browns, Rebecca Rosenbaum (CGS’06), Yayne Hailu (CAS’08), and Ryan Lee (CAS’08); (front, from left) Terrance McGovern (ENG’08), Jayme Lerner (SAR’08), Cherry Chiu (CAS’08), Elyse Maziarz (CAS’08), Cassandra Bulau (CAS’08), and Laura Johnson (CAS’06).

Photo by Kati Cawley, Extra Hands Program Manager