In The News

Extra Hands for Jack Orchard

By Sherry Tyree
SPECIAL TO THE POST-DISPATCH

Calling all Civil Religion readers:

Self-described atheist Jack Orchard, St. Louis author of Extra Hands, has written an engrossing account of his battle against Lou Gehrig’s disease — formally amyotrophic lateral sclerosis.

I’d first heard about Extra Hands while listening to KFUO-FM last autumn when Jack’s dad, Bob Orchard, introduced the book to the radio audience and described his son’s life and his recent medical travails.

As engrossing as Bob’s description was, I did nothing then beyond checking to see if Amazon sold the book and promising myself to look into it.

Then a few weeks ago, a neighbor who knew of my interest gave me a copy. Once I began I couldn’t put the book down.

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."

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.

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.

Phi Delt helps organize 5K run to fight ALS

Ben Sales

Phi Delta Theta has partnered with Extra Hands for ALS to sponsor "Run For Your Life," a 5 kilometer race to benefit the fight against ALS, commonly called Lou Gehrig's Disease.

The race is an annual event started in 2003 and organized yearly by Jack Orchard, who also founded Extra Hands for ALS, a St. Louis-based organization that sends high-school and college students to volunteer at the homes of those with ALS. Orchard also suffers from the disease, which paralyzed most of his body.

'Run for Your Life' event to benefit ALS

BY VICTORIA SIEGEL, SPECIAL TO THE JEWISH LIGHT

With warmer temperatures come lots of runs, walks, and strolls for various non-profit organizations. So how do you stand out from the crowd? You turn it into a costume party and give away a free trip to Puerto Vallarta for the best costumes. On May 3, in Tower Grove Park, that's exactly what Extra Hands for ALS and The Jack Orchard ALS Foundation are doing with their "Run for your Life" (RFYL) event.

"I was looking for a way to produce a unique event that would appeal to our base of student volunteers. After all, who gets excited by yet another walk/run? Without a twist it's just not compelling," Jack Orchard, founder and chairman of Extra Hands for ALS and the Jack Orchard ALS Foundation, said. He was inspired to create a different kind of a race based on one he saw when he lived in San Francisco where many of the runners wear costumes. "It's absolutely crazy and a lot of fun. (Hundreds of people even run in their birthday suits!) One of my friends from graduate school won the best team costume by going as Stonehenge with a group of a dozen others. They actually ran the entire 7.5 mile course, up and down the steep hills of San Francisco, in 10-foot high costumes, and in formation!"

Local students organize run to benefit ALS research

Event named after late husband of former teacher

By Kate Miller
Tuesday, April 8, 2008 2:18 PM CDT

From left, Webster Groves High School seniors Steve Davis, Andrew Dent and Forrest Dougan stand in front of the planning board for the seventh annual Jim Schoemehl 5k Run. The year, 40 students in the marketing II class are organizing the event.

At Webster Groves High School, the marketing II classroom is the buzzing center of operations for the upcoming seventh annual Jim Schoemehl 5k Run.

The students are wrapping up sponsorship deals, working with local businesses for concessions and spreading the word. The run will take place at 8 a.m. Saturday, May 10, at the school, and proceeds will benefit ALS (amyotrophic lateral sclerosis) research.

Extra Hands’ Reaches Out

by Mitzi MacDonald and Jill Barrett

“You know, I used to think that a few of my old girlfriends were high maintenance. Boy, did I have that wrong,” said Jack Orchard. Orchard “speaks” by typing his words into a special computer that tracks his eye movement. He will gaze at one letter at a time, then the computer will blurt out his entire sentence.

Orchard suffers from amyotrophic lateral sclerosis (ALS). This disease, often referred to as Lou Gehrig’s disease, attacks the muscles in the body, finally affecting the person’s ability to speak, swallow and even breathe. The disease does not affect the mind, however.

Jack Orchard Day at Wydown Middle School

By Mike Bush
Copyright 2008 KSDK

Click here to see the KSDK cover story

Jack's charity, Extra Hands for ALS, gives high school and college students the opportunity to help families dealing with disease. After the story aired, his network of volunteers not only expanded, but grew younger.

A Meaningful Life

By Mike Bush
Copyright 2008 KSDK

Click here to see the KSDK cover story

Using something called an Eyegaze communication system, Jack can operate a computer with just his eyes and synthesize speech.

"I can't imagine how people with ALS survived without something like this even 10 years ago," said Orchard.

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.

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.

Shedding Light On ALS

The Rep's "Tuesdays With Morrie" and book "Extra Hands" raise awareness of disease

by Don Corrigan

"A tree's leaves are most colorful just before they die," declares Morrie Schwartz in the play now being performed at the Repertory Theatre in Webster Groves through Jan. 27.

Such simple wisdom from the play, "Tuesdays With Morrie," inspired the ALS Association of St. Louis to make this past Sunday's performance a moving and memorable membership event for the organization.

Extra Hands - Grasping for a Meaningful Life

by Jonathan Frank
Copyright 2007 Ladue News

"When good men die their goodness does not perish, but lives though they are gone."

Jack Orchard is fond of citing ancient Greek mythology, and it would not surprise me to learn that he knows Euripides’ quote. If he is unaware of it, he is certainly conscious of its essence. In his 2007 autobiography, Extra Hands: Grasping for a Meaningful Life, the St. Louisan chronicles his struggle with amyotrophic lateral sclerosis (ALS) and his successful effort to start a service and fund-raising organization to assist families of those with the disease.

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."

Jack Orchard provides 'Extra Hands' for those who need assistance

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

Every once in a while, if you're very lucky, you'll meet someone so inspirational that your perspective on life will change. That person is Jack Orchard.

Diagnosed seven years ago with amyotrophic lateral sclerosis (ALS), which is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy, this remarkable young man has accomplished more since his diagnosis than many people will in a lifetime.

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.

Bob Orchard On The Air

Bob Orchard, father of our founder Jack Orchard, gave an interview on the air at St. Louis' Classic 99 FM, KFUO. Click on the photo to hear the interview. You will need Windows Media Player.

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.

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.

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.

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.

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.

Jack Orchard; Working through crippling illness

Finalist | Community Outreach

St. Louis Business Journal - October 6, 2006
by Rob Luke

Every so often, a Health Care Hero is so inspiring that he changes the direction of another person's life.

This was the case with Jack Orchard, who in 2001 was diagnosed, at age 34, with the nerve-wasting disorder Amyotrophic Lateral Sclerosis -- better known as Lou Gehrig's disease. Those who suffer from the disease rarely live for more than five years after they are diagnosed.

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.

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.

St. Louis on the Air

On November 08, 2005 ALS was the topic of a discussion on KWMU-90.7FM in St. Louis.

ALS broadcast - 49 minutes

Guests:

Lois Orchard
Mother of Jack Orchard

Dale Rohman
Floral Designer
Will launch the ALS Rio Rose to benefit ALS research

Glenn Lopate, M.D.
Associate Professor of Neurology
Washington University School of Medicine

Breaking schmooze: A rose is a rose is a fund-raising flower

By Deb Peterson, St. Louis Post-Dispatch

A ROSE BY ANY OTHER NAME: In an unprecedented gesture, a branded florist's rose will be used to raise funds and awareness for charities related to Lou Gehrig's disease, ALS (Amyotrophic Lateral Sclerosis). Dale Rohman, St. Louis' nationally renowned floral designer and entertainment expert, is partnering with Rio Roses to introduce the ALS Rio Rose. Along with profits from the sales of the roses, tens of thousands of the flowers will be donated to ALS organizations for fund-raising events. The national launch of the new ALS-awareness symbol will be Nov. 15 at the Chase Park Plaza. World Champion Boston Red Sox pitcher and longtime ALS supporter, Curt Schilling, and his wife, Shonda; and former U.S. Sen. John Danforth, and his wife, Sally, are honorary chairs of the event. Jean Hobler, of "Hope Happens," and Lois Orchard, of "Extra Hands for ALS," are co-chairs. Proceeds from the event and some related activities will benefit Hope Happens, The Hobler-Maritz Foundation; Jack Orchard Foundation and Extra Hands; and the Amyotrophic Lateral Sclerosis Association, St. Louis Regional Chapter.

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."

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.

Focus 11: ALS (Amyotrophic Lateral Sclerosis)

By Christine Buck, WB11-TV, KPLR St. Louis

Jack Orchard was diagnosed with ALS in 2002.

He was 34-years-old and newly married when his life turned upside down. He says he never expected to wake up with this disease.

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.

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.

How he did it: ALS patient helps himself and others

By Harry Jackson Jr., St. Louis Post-Dispatch

NAME: Jack Orchard
HOME: West St. Louis County
AGE: 37
OCCUPATION: Runs the Jack Orchard ALS Foundation and Extra Hands for ALS
WHAT HE DID: After being disabled by amyotrophic lateral sclerosis, he started a foundation to send students to help people with ALS. His project won a $25,000 prize from Volvo.
QUOTABLE: "I think there is a grand canyon separating 'I don't want to die' from 'I want to live.'"

On the south wall of Jack Orchard's study in his west St. Louis County home is an original 17th-century map of the world. A close look shows the mapmakers got it wrong. North America isn't shaped like that. And in the lower left corner of the map, the astronomical chart shows the solar system revolving around the Earth.

Orchard finds meaning in the map: " ... things we don't understand, the spirit of discovery, that's central to my life's work.

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.

Orchard wins $25,000 Volvo donation for ALS work

St. Louis Business Journal, March 25, 2005

Jack Orchard, chairman of the Jack Orchard ALS Foundation and Extra Hands for ALS, received a $25,000 donation to the charity of his choice as a finalist in carmaker Volvo's third annual Volvo for Life Awards, announced Thursday.

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.

ALS Patient Forms Support Group For Peers And Their Families

By Deanne Lane
Copyright 2005 KSDK

(KSDK) - Living with ALS, Jack Orchard, 37, cannot move his legs or arms. He can barely hold his head up, and he can move only one finger to work a computer mouse. What he doesn't want is pity.

Mother is gone, but the kindness of strangers helps

By Bill McClellan
Of the St. Louis Post-Dispatch
12/27/2004

Bev Aitken died early Sunday morning. So she made it through Christmas, and she saw for herself that the kindness of strangers is more than just a phrase.

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.

PRESS RELEASE: Fraternity Wins Award for Charity Event

For the second year in a row, the Phi Delta Theta fraternity of Saint Louis University has been awarded the Paul C. Beam Trophy for producing the Shoot for a Cure Golf Tournament benefiting the Jack Orchard ALS Foundation. This trophy is awarded to the Phi Delta Theta chapter that produces the best philanthropic event of the year.

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.

Teens will help patients cope

By Rayne Wolfe, The Santa Rosa Press Democrat, May 16, 2004

Two Montgomery High School sophomores are among the first North Bay volunteers for a new national effort to help families of patients who have Lou Gehrig's disease, and a Santa Rosa man will be the beneficiary of their help.

Tara Seymour, 16, and Kelly Richmond, 16, are taking part in Extra Hands for ALS, a group designed to offer help not provided by other support groups for patients with amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease.

Helping others help local consultant works for ALS

By Matthew S. Robinson, The Allston-Brighton Tab, April 23, 2004

"Today, I am the luckiest man on the face of the earth."

So said Lou Gehrig on the day he left his beloved baseball. Facing a fatal illness one which was later named for him, Gehrig was still able to focus on the positive aspects of his life and to live it to the fullest.

For the thousands of people who live with Gehrig's legacy through their common obstacle Amyotrophic Lateral Sclerosis, life is indeed a precious commodity, one to be treasured and celebrated.

Fortunately, these people now have support.

Big hair, big heart: Simpson costume wins in benefit

By Glen Sparks, St. Louis Post-Dispatch, October 30, 2003

Amy Hankins put on her running shoes Saturday morning and fastened a mountain of blue hair to her head. She was serious. She had a honeymoon vacation to win.

Hankins ran in the first 5K Run for Your Life costume race at Tower Grove Park in about 30 minutes - pretty good considering she was wearing a cumbersome Marge Simpson costume. Her get-up also included a dress, a red necklace crafted from Christmas decorations and a coat of yellow paint that she daubed on her face, arms and legs.

The judges decided that she bore a striking resemblance to cartoon slob Homer Simpson's long-suffering wife. They awarded her and her fiance, Blake Tilley, with a free weeklong trip to Mexico.

Jack Orchard Named Outstanding Alumnus

On September 17, 2003, Jack Orchard was presented with the Outstanding Alumnus Award by John Burroughs School. This award is given each year to a graduate of the school who has made a positive and outstanding contribution to mankind by virtue of example and service. Jack is the youngest recipient of this award by more than twenty years. The following is a text of his address to the student body and alumni:

Budding Scientists

By Jessamyn Blau, St. Louis Post-Dispatch, June 15, 2003

Many eighth-graders like to play ball, but the "buckyballs" St. Louis students put to use in their award-winning project are among the tiniest.

The carbon molecules known as buckyballs are a key part of four John Burroughs School students' proposal for an alternative treatment for ALS, or Lou Gehrig's disease. Lucas Bruton, Anna Fung, Michael Hill and Joel Schuman competed against nearly 15,000 others in their age group to land second place in this year's national ExploraVision Awards competition.

The contest, co-sponsored by Toshiba and the National Science Teachers Association, encourages students to imagine what technologies will exist 20 years from now. In addition to $5,000 savings bonds, digital cameras and a trip to the nation's capital, the four won a laptop for their school.

The students are in Washington this weekend to receive the prizes and present their project - "SMAGALS: Stop Myelin-Associated Glycoprotein (MAG) for Amyotrophic Lateral Sclerosis (ALS)" - at a science showcase at the National Press Club.

The students say a speech by Jack Orchard, a 1985 John Burroughs graduate who has ALS, encouraged them to devote their project to potential treatment for the disease.

Students Sketch Treatment for ALS

By Andrea Cohen, St. Louis Post-Dispatch, March 12, 2003

"Six months after a morning assembly inspired them to start working on the project, four eighth-graders at John Burroughs School were honored at an assembly Tuesday for their work on finding a treatment for Lou Gehrig's disease.

The four students are regional semifinalists in the middle school category of Toshiba's ExploraVision science competition. The idea of the program is to create a technology that could be used 20 years from now. Twenty-four teams, including one from Ladue High School, were honored nationally for their projects.

The team from Burroughs was motivated by 1985 Burroughs graduate Jack Orchard, who suffers from amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease. Orchard spoke in late September to students at his alma mater about the degenerative disease, encouraging them to volunteer for victims of ALS and support scientific research of the disease.

He 'did something'

By Mark Vittert, The St. Louis Business Journal

Lots of lessons are certainly to be learned in school. Some of the best, as we know, are gathered outside of the classroom ... a personal discussion with a teacher, a private talk with a coach, there are many ways to learn during one's school days.

But, the other day at a St. Louis school, there was exhibited one of the best educations any student could receive. The lesson was comprised of courage and determination — I had heard of the speech and asked for a film of the event.

Patient Activism Hits a New Level With Hiring of Personal Scientists

By Amy Dockser Marcus, The Wall Street Journal, April 25, 2002

There is no cure for ALS, commonly known as Lou Gehrig's disease, a neurological disorder that paralyzes then kills patients. But Stephen Heywood, diagnosed three years ago, has begun taking a leprosy drug to slow the course of the disease.

Mr. Heywood would never have known about the potential of the drug if it weren't for his 35-year-old brother, James, who in desperation set up the ALS Therapy Development Foundation three years ago, after realizing that few drug companies were interested in developing treatments for Stephen's rare affliction.

The Heywoods are on the leading edge of a movement that is taking patient activism to a new level: setting up foundations whose purpose isn't just to inform the public about diseases but to do actual research and drug testing in hope of speeding progress toward a cure. The movement offers new hope for the 25 million people with so-called orphan diseases that are rare or hard to cure.