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.

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.

Since his own diagnosis, Orchard, a former investment banker and venture capitalist, has established Extra Hands for ALS (EHALS), a volunteer support group that pairs high school and college students with ALS patients.

Student volunteers in the EHALS program are trained to help ALS victims with the many aspects of their everyday lives that they struggle with because of the progressive disease. Through such work, the volunteers develop empathic, philanthropic and leadership skills.

Since its establishment, EHALS has signed up 125 volunteers to help ALS sufferers in the St. Louis region. It also has 75 mentors -- adults who teach the students skills and answer their questions. The group has expanded to form chapters in eight cities nationally.

In St. Louis, the group serves between 20 and 22 families, though the number regularly changes because patients die and identifying new families to serve can be a little like "a juggling act," said EHALS CEO Jim Presbrey.

EHALS has an annual operating budget of $85,000 per location. Much of the money comes from Orchard's own charitable foundation.

All this despite the fact that Orchard's ALS has progressively destroyed his nervous system to such an extent that he is now a quadriplegic and recently lost the ability to speak. He now communicates by e-mail, using a special set of eyeglasses that emit an infrared light beam. By looking at letters displayed in the form of a keyboard on his computer screen, which is equipped with infrared sensors, he communicates letter by letter.

Extra Hands for ALS began life as the Jack Orchard ALS Foundation, which established immediately after his diagnosis "with the simple notion that I'd support research and patient services," he said. Around six months later, he developed the concept of EHALS. He said the idea "turned out to be a firestarter so quickly it eclipsed the foundation."

Nonetheless, it was through the foundation, which has around $50,000 on hand after a round of grant disbursals, that Orchard touched the life of Kristen Williamson in February last year. Williamson, then working at Procter and Gamble, contacted Orchard's foundation with the idea of organizing a charity marathon run to aid a friend of her father's who was suffering from ALS.

Williamson recalled being amazed at Orchard's energy and drive, particularly for getting projects started as soon as possible. "When I asked him (during their first meeting) when we should get started, he replied, 'Yesterday,'" she said. "He doesn't waste any time and believes that every minute is valuable."

Orchard's determination to make a difference despite the crippling limitations of his disease inspired Williamson so much during her time working with him on the ALS charity marathon that she decided to change the direction of her career. Several months after meeting him, she quit her job at P&G to become development director at the Guardian Angel Settlement Association, a charitable group that assists the working poor in inner-city St. Louis.

"His inspiration made me want to do something that would make a difference," she said.

In his recently finished book, Orchard explains why he chose the path of charitable service following his ALS diagnosis: "I felt a little odd being called heroic when I really felt I had no choice but to take this path if I wanted to keep my sanity."

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

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.

ALS, or Amyotrophic Lateral Sclerosis, is a neurological disease. It attacks nerve cells that control muscles. Eventually, the muscles atrophy and a person is literally trapped in their body but their brain functions normally. They usually only live three to five years.

Orchard suffers from sporadic ALS, just like 90 to 95 percent of cases. It's genetic in only five to ten percent of cases.

Jack's wife, Eve Tetzlaff, says there are only theories. "It may be a genetic predisposition coupled with an environmental factor," she said.

Lead contamination from the 100 year old Doe Run Smelter in Herculaneum, Missouri is well documented. The company has dug up contaminated yards and bought out homes. There are 2800 people in Herculaneum. Many of them wonder if there's a connection with Doe Run and the number of ALS cases there.

One of them is Shelia McHawes, who's brother in law died of the disease three years ago. McHawes says she knows of two dozen cases of ALS within ten miles of the Doe Run plant. She doesn't blame Doe Run. She wonders why there are so many cases here when there are only 30,000 cases in the country. "When you have so many cases of a rare illness that gets you curious and you want to know what's going on," she said.

The federal government is also asking questions. A three year study is ongoing to determine whether there are clusters of multiple sclerosis and ALS cases not only in Missouri but around hazardous waste sites in Illinois and three other states as well.

Doe Run issued this statement. "Like other community members, we are eager to hear about any scientific findings in Jefferson County. From what we understand, this three-year study may provide some peace of mind about ALS, and more information is always a positive."

Dr. George Turbalese is one of the researchers looking at data from 1998 to 2002. The study will be completed by the end of summer. "We discovered about 36 cases in the entire Jefferson County," said Dr. Turbalese. "Our study will be the first one of it's kind for Missouri and the most up to date in the country right now," he added.

Jack Orchard says it's about time a possible environmental link to ALS is investigated.

Eve says everyone should care about this disease. "You could be like Jack and be a perfectly normal young man and one day wake up with a terminal illness," she said.

Shelia McHawes added, "Exactly, you'll care if you ever see somebody you love suffer with it."

Another reason to care is researchers say if they could solve the mystery of ALS, it might also unlock the answer to at least 40 other neurological diseases.

Jack Orchard and his wife Eve Tetzlaff established the Jack Orchard ALS Foundation. Extra Hands for ALS is part of the program designed to help assist people with ALS. This program also introduces high school students to community service and teaches them about the concept of "giving back."

For more information on how you can get involved go to: info@ extrahands.org.
Copyright © 2005, KPLR

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.

"What you see is a person trying to peer through the heavens to understand our universe at a time when so much we now take for granted wasn't known," he says.

Orchard has always preferred to be surrounded by things that make him think. Paintings hang from every wall of the home. Sculpture is in every corner. Some are reproductions of famous paintings that his wife, Eve Tetzlaff, calls "famous knockoffs."

Being in his mind is so important now, because his arms don't work, save for a hand and wrist that click his computer mouse. His legs no longer walk.

As he speaks, all that moves are his facial expressions, his hand on a computer mouse and his left leg, which trembles a bit. These are the effects of ALS, amyotrophic lateral sclerosis, a condition that has damaged his nerve cells to the point that he is mostly paralyzed. The end result is early death, something Orchard knows awaits him. He predicts that in a year or so, he won't be able to live without life support.

But if you want a fight on your hands, offer him sympathy. He doesn't want it; doesn't need it. He just doesn't need to waste time. That would speak to the amaryllis flowers sprouting like French horns in the south and west windows of his study. They grow extraordinarily fast and bloom within weeks, sometimes days after planting.

If this is the time he has left, he'll spend it looking at beautiful, thought-provoking art, helping others and fighting for a cause.

Helping others

Orchard speaks softly as he clicks the mouse below the computer screen to type letters with uncanny rapidity or form new plans for the Jack Orchard ALS Foundation and Extra Hands St. Louis. (Extra Hands recruits students to assist people with ALS; the students help around the house, run errands and perform other tasks.)

Orchard started the foundation in 2001 to help bring more attention to ALS. The condition is relatively rare; the ALS Association says about 30,000 people are known to have the condition at any given time. About 5,600 new cases are diagnosed annually.

As Orchard researched the disease early after his diagnosis about four years ago, he found that a lot of America's research muscle went to conditions that affected more people and got more attention - HIV, breast cancer and others. The survivors of those conditions had longer life expectancies and could become activists.

Not so for people with ALS.

"ALS was identified 136 years ago," he said. "Lou Gehrig was diagnosed (more than) 60 years ago." There's been no increase in longevity after diagnosis in all that time.

"To me, the answer is fairly simple," Orchard said. "There are only 30,000 people living with ALS in the United States. That means the pharmaceutical industry has no incentive to go after treatments."

Orchard recently was a finalist in the Third Annual Volvo for Life Awards, which honor people who go "above and beyond" to help others. The winner got $50,000 and a new car for life. "I came home with $25,000 for Extra Hands and Volvo's commitment to work with us," Orchard said. "So I would say that I've won big time."

His story

Orchard has always relished challenges. In high school he wrote poetry, played the piano, created sculpture. So, naturally, when he went to Harvard University, he studied economics.

"For art, you need talent," he said. "You don't need talent to be in business."

He earned his MBA at Stanford University. His fascination with the emergence of a new Eastern Europe eventually led him to Moscow, where he worked as a venture capitalist with an international banking firm.

That's where he learned he had ALS. First his hands lost their grip, then other motor skills began to fail.

For Orchard, ALS brought one life to a stop and started a new one. Of having ALS, he says, "It sucks." And he knows it's the same for others who struggle with him.

He misses the small things life once offered. Walking from room to room in his home. Being able to spend time alone.

The mobility was gone, but not the drive. So he tapped into what ALS couldn't take away: his intellect. One element of ALS is that the vast majority of people with the disease don't suffer mental impairment.

It's clear that Orchard remains sharp and focused. His head is supported by a mechanism so he can speak and look around somewhat. His facial expressions convey his interest and intelligence. His eyebrows sometimes cock, and he likes eye contact.

He knew that several ALS organizations existed, but he thought they seemed to present people with the disease as helpless, hopeless victims and little else. There were no true advocacy organizations carrying the word in order to get more attention from researchers and the public, he said.

It was like when the doctors inevitably said, "There's nothing more you can do," that became the ALS mantra, Orchard said.

That's what spawned his foundation.

The goals were to help people with ALS and get them to take up the battle to inform and alert people about the disease. So Orchard set up a two-pronged operation. Here's how it works:

The mission and tone of the foundation present people with ALS as activists, not victims.

Extra Hands recruits students to visit families and help with chores and errands. Orchard got that idea from his days at John Burroughs School, where students were required to perform one volunteer activity a year. Extra Hands frees up people with ALS so they have time to work for their rights to have more research dollars aimed at ALS. As the students build relationships with those affected by ALS, they become "impassioned," he says, about fighting the disease. Volunteers participate in fund-raisers and awareness activities for the foundation.

Today

At this point, Extra Hands St. Louis has deployed 165 student volunteers to work two hours each week in the homes of people with ALS. About half of that number are currently active.

The program also has trained 22 adult mentors who supervise the relationship between students and the families they help. Several dozen other volunteers help stage events.

The activities have spread beyond St. Louis; other cities with Helping Hands organizations include San Francisco; Los Angeles; Orange County, Calif.; Dallas-Fort Worth; Boston; and Boise, Idaho.

Across the country, the foundation has trained almost 400 students, 85 mentors and helped 105 families affected by ALS - including 32 in St. Louis - since the effort was launched in 2002.

What is ALS?

ALS stands for amyotrophic lateral sclerosis. It's best known as Lou Gehrig's disease, named for the New York Yankees baseball player who contracted it in the 1930s.

The disease damages nerve cells that affect muscle function. As the cells degenerate, muscles stop working, atrophy and die; the person loses muscle control and can become paralyzed.

Survival

The average length of survival after onset is three to five years. Some people live 10 or more years. In a small number, the disease simply stops causing additional damage. No one quite knows why. While symptoms vary, the weakening and paralysis of muscles are experienced by everyone.

Researchers have yet to pin down risk factors for ALS other than age. There's no cure, although the Food and Drug Administration has approved Rilutek, a drug that modestly slows the progression of ALS.

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.

Orchard, who has amyotrophic lateral sclerosis (or ALS, known as Lou Gehrig's Disease), is the co-founder of St. Louis-based nonprofit Jack Orchard ALS Foundation. The foundation supports scientific research into ALS therapies, a national education campaign and a volunteer-based patient service program known as Extra Hands for ALS. The Volvo awards recognized Orchard's work with student volunteers.

The Volvo for Life Awards, launched in June 2004 to recognize everyday heroes, provide $1 million in awards and financial contributions. Three finalists in categories of safety, quality of life and environment each received a $25,000 donation to their choice of charity. One winner in each category received a $50,000 contribution, and one overall winner named "America's Greatest Hometown Hero" also received a Volvo every three years for life.

Orchard was a finalist in the quality of life category. Other winners and finalists were:

Quality of life:

- Overall winner and category winner Hope Bevilhymer of West Jordan, Utah, founder of "Limbs of Hope," which redistributes prosthetic limbs to developing countries.

- Finalist Jose Morales, Elmhurst, N.Y., helps Spanish-speaking people in Queens, N.Y., recover from substance abuse.

Safety:

- Category winner Paula Lucas, Portland, Ore., created the American Domestic Violence Crisis Line (866-USWOMEN) to provide services and support to American women and children abused overseas.

- Finalist Monica Caison, Wilmington, N.C., helps search for missing loved ones.

- Finalist Abdul Hafiz, a Staten Island, N.Y., lobbies politicians to pass a new law requiring special safety gates for fire escapes.

Environment:

- Category winner Lisa Busch, Sitka, Alaska, spearheaded Sitka Trail Works to improve an existing trail system, provide jobs for unemployed residents, and increase tourism.

- Finalist Bill Maynard, Sacramento, Calif., grows gardens to beautify his community and feed low-income residents.

- Finalist Robina Suwol, Van Nuys, Calif., advocates for policies to protect school children from

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.

"Pity is a short term emotion. Everyone has problems in their own family. If we rely on pity for ourselves then we won't ever survive," says Orchard.

With his brilliant mind intact, Orchard is fighting back. Orchard founded "Extra Hands For ALS", an innovative service where high school and college students visit ALS families in St. Louis and across the nation.

They help with anything from household chores to just passing the time together. Orchard stresses, "One of the magical things about Extra Hands is it isn't about having sympathy for people. It's about building a bigger and stronger community out of a bunch of young impassioned and energetic people."

Jack has now been selected as a finalist in the "Volvo For Life Awards". The automaker is honoring everyday heroes and those with a passion to create change for generations to come.

"I think that students who follow a dream and help ALS families through our programs are the real heroes," Orchard says. "But if they want to call me a hero and help us grow the program to help more people, then fine by me."

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.

The whole thing began when one of Bev's kids came home with a duffel bag filled with money. Jeff Aitken, who is 17, found the bag in a shopping cart at Schnucks. He's a junior at Ritenour High School and he works part time at Schnucks. He found the bag while he was in the parking lot collecting carts at the end of the night.

"The last roundup" is what the kids call it. He looked in the bag and saw cash. Hundred-dollar bills, and lots of them. He took the bag to his car. This was something to talk over with his parents.

That speaks highly of the relationship Jeff has with his folks. Also, it speaks highly of Jeff because there really wasn't much question what his folks were going to say. Money has never been a driving force for Dave and Bev Aitken. That's why Bev quit her job in 1982 when the first of their four children was born. She and Dave decided to forgo a second income so that Bev could be home with the kids. So when Jeff came home with a bag with $21,500 in it, he had a pretty good idea what his folks would tell him. Do the right thing and return the money.

That was not easily done, however. There was one check in the bag and it was made out to Aladdin Wireless. That company was not listed in the phone book. Dave could not find it on the Internet. The thought occurred to Dave that perhaps this was drug money. That would explain the cash. If it was drug money, it was like an act of providence. Bev had ALS. Dave had quit his job to care for her. They had gone through their savings.

So it would have been easy to rationalize a decision to keep the money, but no, that would not be right. Jeff took the bag to the police station. It turned out that the fellow who lost the money - yes, there was an Aladdin Wireless, but it was a brand new company - was at the police station to report his loss. He was so thrilled to see that somebody was returning the money that he gave Jeff a $2,000 reward. The story made the newspaper and the radio stations. Jeff became something of a hero.

All by itself, that had to be a wonderful Christmas present for Bev. One of her kids had done the right thing and had been recognized for it.

People who knew the family contacted me and said there is really so much more to this story. This is a great family, the people said. So I visited and then wrote a column about Dave and Bev. A number of people responded. We'd like to help, they said.

So people sent cards, and some sent checks, and somebody even showed up at the Aitkens' door on Christmas Day with cookies and a gingerbread house.

Bev died in the early morning hours Sunday, the day after Christmas.

I stopped by later in the morning to drop off some cards people had sent to the newspaper. The family was gathered. Mike is the oldest at 22. He is studying political science at Lindenwood. Jen is 20 and an anthropology major at Southeast Missouri. She has taken a leave from school to help care for her mother. She'll be resuming her studies either this spring or in the fall. Jeff and the youngest brother, Steve, 13, were also there. Dave was trying to figure out funeral arrangements. He interrupted that task to talk about the outpouring of care the family has seen this last week or so. It has meant a lot, Dave said. He showed me the gingerbread house.

Mike talked about trying to help organize something to promote ALS research. He mentioned the Jack Orchard Foundation. I said I knew Jack and his wife, Eve. They're special people. As are the Aitkens. And the people who reached out to help. It's nice to know that Bev was able to see the kindness of strangers.

It must be heart-breaking for a mother to know she is leaving her children, but there is some solace, I like to think, in knowing that the world in which she is leaving them is not an entirely cold place.

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.

"They are an impressive band of brothers," said Jack Orchard, founder and Chairman of the Jack Orchard ALS Foundation. "It's even more impressive that they did it two years in a row with competition from 164 other chapters," he added.

"We want to win the Paul C. Beam Trophy every year," said Mark Ebert, the 2004 Shoot for a Cure Chairman, "and we have plenty of ideas how to improve the Shoot for a Cure."

Phi Delta Theta
The Fraternity now has more than 165 chapters in 43 states and six Canadian provinces. The Fraternity has initiated nearly 218,000 men since 1848. The men of Phi Delta Theta share a commitment—to the intense bond of friendship between brothers, high academic achievement, and living life with integrity. A Phi Delt has high expectations of, and for, himself and his brothers. He believes that one man is no man.

Jack Orchard ALS Foundation
Founded in 2001, the Jack Orchard ALS Foundation's mission is to build hope for people living with ALS by funding scientific research into "near-term" therapies to extend life expectancy at diagnosis, and by supporting Extra Hands for ALS to provide practical help for families struggling with the disease. For more information, visit www.jackorchard.org.

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:

Good morning. My memory of this ceremony from when I was sitting out there is that the honorees were people of towering accomplishments, so to be placed in their company is very humbling.

They told me I could take a few minutes to talk about our work, but you all know more about Extra Hands for ALS and the Jack Orchard ALS Foundation than anyone. So I thought I might talk about something I have learned recently that is more important. It is about a place called the comfort zone, and the will to believe.

If you are like me, then you have spent much of your life so far figuring out who you are. What do you like to do? What do you not like to do? What are you good at? What are you not good at? What kinds of people do you like? What kinds of people do you not like? As you answer questions like these, you give definition to the walls of the place where you feel most like you, the place where you are the most "in your element." While you are there, inside your comfort zone, everything is easy and your choices seem obvious.

But there are problems with staying inside those walls. The first is that your comfort zone is mostly a static place, and the world around is a pretty dynamic one. So if you stay there, the world with all its opportunities might pass you by. The other problem with your comfort zone is that the longer you stay there, the taller and thicker the walls will become. Getting out will become harder and harder. You may even lose sight of all the things you could do if only you could tear down the walls.

That is when you need the will to believe; to believe that even if something wonderful lies outside your comfort zone, you can still go to it. Or to believe that even if your life doesn't turn out the way you thought it might, you can always change it. But you can't do anything without the will to believe in yourself, to believe that you are capable of anything.

They told me there was nothing I could do about ALS. So with the walls of my comfort zone coming in tighter and tighter, I keep knocking them down because I believe that with your help, and with the help of students just like you all over the country, I can change what it means to be diagnosed with ALS. If enough of you will help me, we can remove ALS from the landscape altogether. But it will only work if you have the will to believe in it, if you are willing to go outside your own comfort zone. I know you can do it.

Thank you.

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.

At an early morning assembly of some 600 or so junior high and high school students, Jack Orchard spoke about ALS, the affliction which took Lou Gehrig's life.

At first, Jack, who was seated on the stage, referred to a large projected photo of himself and his buddies in their football uniforms, embracing after a victory. He spoke haltingly. He said that the picture had been taken 18 years before.

The students certainly recognized the football uniforms since Jack had once been a student at that very school — he had sat once, right where the kids presently were — he had been one of them.

And now, everything had changed ... he was dying. But, this was in no way a talk of sorrow on Jack's part, no, it was rather an effort to educate the kids about ALS and motivate them to help others who have been stricken.

That's what Jack believed his message was to be ... it was, really, to be different than that.

As Jack spoke of how he originally had some of the early symptoms: weakness in certain muscles, small episodes of muscle tremors, a little absence of coordination, it all brought back a certain memory to me.

Many years ago, perhaps 15, I was playing golf with my friend Bert, well actually, Alberta. She and her husband Tom White, were, unusually, both left-handers.

We were all having fun up in Michigan, on a summer's day, when Bert commented to me that she seemed to be having difficulty closing her right thumb around the club handle. That was her first sign — ALS took the wonderful Bert White two years later.

I know that what Jack was talking about was as serious as it gets. He was fighting and educating, and motivating and offering all he could, to move these kids to learn and to assist others.

As a matter of fact, Jack and his wife were going around the country, making this same presentation to other schools — he was on a campaign of the best sort — he had a mission — for those who would follow later.

Early in Jack's remarks, he said that when the doctor had finally, after much testing, told him he had ALS and told him that his muscles and body would begin to atrophy, and told him that he had three to five years to live, that then the doctor also ended with "there's nothing you can do." Jack said those were the worst words ..."There's nothing you can do."

Well, he has certainly helped kids understand ALS and certainly many of those students will begin to assist ALS victims.

But, Jack, without once making the point himself, is teaching thousands of young people that even under the worst of circumstances, even faced with the darkest and most difficult of all journeys, there is still "something one can do."

Jack Orchard's unselfish effort is making an incalculable contribution.

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.

"The patient marketplace failed me," says Fran Delaney, a 51-year-old ALS patient, whose eponymous fund donated close to $500,000 to the ALS Therapy Foundation last year. "Now I have scientists who are working for me."

Though the vast majority of family disease foundations still devote most of their efforts to publicity and fund-raising, a few have stepped directly into drug development. The Hereditary Disease Foundation, which supports research into Huntington's disease, an inherited brain disorder that disrupts motor control and eventually kills patients, has formed an alliance with Aurora Biosciences Corp., a San Diego biotech company that has since been acquired by Vertex Pharmaceuticals Inc. The foundation, set up by Milton Wexler after his wife and all of her three brothers were stricken with the disease, is providing more than $1 million to Aurora to test 500,000 drug compounds -- essentially hiring Aurora scientists to focus on finding a cure. "We pay them to do the work we want them to do," says Minka vanBeuzekom, managing director of the foundation's Cure Huntington's Disease Initiative.

The Institute for the Study of Aging, established in 1998 with funds from the Estée Lauder Trust, has gone further. Last year, the institute helped get a new biotech company called Zapaq Inc. off the ground. Zapaq is focusing on developing drugs that inhibit an enzyme involved in producing a protein that is considered a key factor in Alzheimer's. The institute loaned Zapaq $500,000, which can later be converted into equity in the new company.

The ALS foundation has been unusually aggressive and creative. It now runs the largest in vivo (animal) screening program for ALS, luring away scientists from pharmaceutical and biotechnology companies with market salaries and the enticement of working directly for patients in critical need.

James Heywood, an engineer, set up the foundation in April 1999, three months after 33-year-old Stephen's diagnosis, using money from his parents, relatives and friends. James's wife and sister-in-law are belly dancers, and they performed at fund-raising dinners for the foundation held at a local Middle Eastern restaurant. The foundation's latest financial report shows $4.1 million came in last year from contributions, fund-raising events, in-kind donations and interest and capital. Total net assets were $1.5 million.

Every two weeks, the foundation receives at its laboratory in the Heywoods' hometown of Newton, Mass., a shipment of mice engineered to contract a genetic form of ALS around the 80th day of their lives. The mice live to about 130 days when not treated.

The lab operates like a factory, testing drugs on the mice more quickly and less expensively than in an academic or for-profit business setting. Mr. Heywood says his model is Henry Ford's assembly line building more cars at an affordable price. He isn't driven by unlocking the mysteries of what causes ALS, and the scientists that work for the foundation aren't trying to make a profit or publish academic papers.

The one burning question the foundation uses to measure success is: Did the drug they tested make the mouse live longer? "We don't have five years to wait for the traditional drug discovery process," says Mr. Heywood. "In five years, everyone I know would be dead."

Once they have a promising finding, the foundation spreads the word to ALS patients and doctors all over the world by e-mail, the Internet and in regular newsletters. The aim is to get the information out to patients as quickly as possible so they can immediately talk to their doctors. Recent testing suggests a drug for African sleeping sickness shows promise in treating ALS, as does a nonsteroidal anti-inflammatory drug. So the foundation is working to set up a clinical trial to evaluate those medicines for ALS.

From those efforts, Stephen Heywood has added the leprosy drug to his regimen, and his family is convinced the progression of his disease has slowed. Though he is now confined to a wheelchair and is losing the ability to speak, "we as a family feel that these drugs have helped extend his life," says James Heywood, although he acknowledges that with a disease like ALS it is impossible to be sure.

Jill Heemskerk, an official at the National Institutes of Health, says the federal research agency supports the idea of such research because it can save valuable time in the search for a cure. "Even the negative results are useful," says Ms. Heemskerk, as they help drug companies focus on the most fruitful avenues of research. Still, she adds, there is a risk in working so fast: "You might miss something that perhaps shows only a small effect on the mouse but might be important."

Indeed, Dennis Ausiello, physician-in-chief at the Massachusetts General Hospital in Boston, who has followed the work of the ALS foundation and other patient groups, says patient-driven efforts could divert funding from basic research that is more likely to yield better long-term results. "You can't do all of science this way," Dr. Ausiello says. Still, he says he supports such efforts and predicts that they will be increasingly popular among patients desperate for an immediate treatment.

Despite their narrow focuses, individual disease foundations are discovering that they are encountering many similar issues. Diseases like ALS and Alzheimer's share some of the same biological pathways, and some groups have begun exchanging information and databases about drugs that might help both diseases. Mr. Heywood recently spoke at a Huntington's disease conference about the group's drug-screening program with ALS mice.

But mainly it is a common frustration over bottlenecks in drug development that has led to growing calls for joint action by patient groups. Jack Orchard, a 34-year-old ALS patient, set up the Jack Orchard Foundation that, in addition to raising funds for ALS research, provides information on a Web site about congressional bills that affect all patients with rare diseases.

"When I think of myself as an ALS patient, I am one of 30,000," says Mr. Delaney, who is already paralyzed in his left side and is now losing the use of his right arm. "When I think of myself as someone with a rare disease, I am one of 25 million. I have more clout with drug companies."