This article first appeared in the St. Louis Beacon, July 5, 2009 - When Jack Orchard knew his long fight with ALS was nearing an end, he set up the Jack Orchard Memory Blog and invited his friends to “share stories about the times we spent together. He imposed only one rule: “Please make sure to share the times when I made an ass of myself.”
The invitation was typical of Mr. Orchard’s acerbic humor. His orders notwithstanding, most of the memories offered were filled with admiration and recognition of a life well spent. Jack Orchard had prepared to die as he had lived: with dignity, determination and purpose.
“From an early age, it was clear that Jack was highly disciplined and directed,” said his mother, Lois Orchard, an experimental psychologist. “The one quality he evidenced growing up was the ability to set a goal and pursue it until it was achieved. He would calculate how to achieve the goal and he was able to energize other people to help achieve the goal he had set.
“He was one who was comfortable swimming in deep water,” she said. ”Everything he did was truly improbable.”
An Improbable Life
One of the most improbable things Mr. Orchard did was write a 183-page book after most of his body had ceased to function, including his fingers and his voice. He wrote his memoir, “Extra Hands-Grasping for a Meaningful Life,” with his eyes. He learned to use Eyegaze, a special computer that tracks eye movements and types the letters on a screen, at the highest speed possible. Proceeds from “Extra Hands” were used to fund the nonprofit foundation he founded, Extra Hands - ALS, that paired high school and college student helpers with people living with ALS because, he said, ALS can be a lonely disease.
”Extra Hands” chronicled Mr. Orchard’s life from the 1980s, when he was a highflying Harvard grad who, as a financial consultant, helped to modernize Soviet Russia’s financial industry, on through his life as a young man diagnosed and living with ALS, amyotrophic lateral sclerosis.
ALS, commonly known as Lou Gehrig’s disease, is an incurable, fatal neurodegenerative disease that affects the nerve cells of the brain and spinal cord. It slowly and inevitably destroys a person’s ability to move. Mr. Orchard wrote, upon learning about eight years ago that he had ALS, "Whether I died that moment or slid slowly toward my end, I finally understood that only I could change how much meaning there would be in my life. ... I stared at my face in the mirror and thought, 'Get busy, you fool.' "
And busy he got. He immediately began to do ALS research and to seek ways to help others. That search led him to Jamie Heywood, whose brother had died of ALS and whose family had founded the ALS Therapy Development Institute. He turned to Heywood for help, but Heywood said Mr. Orchard provided help.
“Jack was instrumental in getting our organization off the ground,” Heywood said. “The Orchards were the second or third family committed to helping fund the institute. Jack provided business advice and helped with organizing. He had a vision of getting research programs running first and then he had the vision that kids from school and the community could help.
“He didn’t ask why (he had ALS), he just made the best of it. He really made great things happen – a testament to a great human being. I have this memory of Jack smiling when he was talking about a new idea with a sparkle in his eye. Jack, very early on, with no hesitation, decided this was going to be a place where he really made a mark.” From the time he was a child, long before ALS entered his life, Mr. Orchard was determined to make his mark in the world.
No Time For Sleeping
“He really cared about doing something important,” said his older sister, Connie Hoffman. “He worked extremely hard – always. When we were kids, Jack always was very determined to be successful. I can remember being in college at Johns Hopkins – he was about 13 and I was about 19 – I called home and he was up late at night. I asked him why. He responded: ‘I have a great deal to learn and I’ll sleep later.’ It turns out, sleep was the only thing that Mr. Orchard was willing to delay.
He was born in St. Louis on Aug. 11, 1967, and graduated at the top of his class from Community School in 1979 and John Burroughs School, where he was captain of the football team, in 1985. He graduated with honors from Harvard University with an A.B. in economics in 1989, and from Stanford University Graduate School of Business with an MBA in 1995, doing much of the work while living and working in Russia. His work in Europe was enhanced by the fact that he spoke Russian and French fluently.
By record and all accounts, Mr. Orchard was smart.
“He was rocket-scientist smart,” said Mark Jaffe, who admitted a bit of bias, as he is part of Mr. Orchard’s family (his sister married Jack’s brother, Harry).” The two have known each other since Little League days.
“Jack was in a hyper-competitive environment academically and at the top of his class; I was in the half of the class that made his half the top,” Jaffe laughed. “But he brought me up academically; I hung onto his coattails.”
“(With ALS) there were no good days and bad days – every day was a slide,” Jaffe said. “Jack always rose to the challenge; he fought the best fight I’ve ever seen in my life.”
Helping To Shape The World
Mr. Orchard was the founder and chairman of Extra Hands for ALS and the Jack Orchard ALS Foundation, both of which were founded in 2002. But before his work in the fight against ALS, he was the founder and managing director of several companies including, iSpringboard, a venture capital firm, Red Square Software, a software development company, and United Financial Group, now Russia's largest independent investment bank, working with Eastern Bloc companies until Russia collapsed.
He served on advisory boards of the ALS Center at the University of California San Francisco Medical Center and the NeuroRestoration Research Initiative affiliated with the Kennedy Krieger Institute in Baltimore. In 2005, Mr. Orchard was named as one of nine finalists in Volvo of North America's Volvo for Life Award which recognizes ordinary people who go above and beyond the call of duty to help others.
“In this world, there are shapers and adapters,” said Marc Spier, who attended Stanford with Mr. Orchard and served on the Extra Hands board. “Jack, by his DNA, was a shaper who adapted to overwhelming circumstances and limitations. He was forced to adapt to the limitations but he exerted himself in amazing ways on the world around him and he changed it, both in business and ALS.
“He was quite profound in the way he shaped the world around him and he brought a sensitivity to the work. He fought back in productive ways. He succeeded in helping families dealing with ALS as well as the people who were suffering.”
Finding Love
Kristen Williamson agrees that Mr. Orchard changed the world; he also changed her.
Mr. Orchard inspired Williamson to leave her job at Proctor and Gamble to work for Guardian Angels Settlement Association, a nonprofit organization that provides services to low income children in the city of St. Louis. She’s the organization’s development director.
“One of the best gifts that Jack gave was the knowledge that your life can be so much fuller if you look outside yourself and help other people,” Williamson said. “He showed people that despite physical limitations you can still make a huge impact and change the world. He changed the world for a lot of people.”
Williamson, 29, met Mr. Orchard several years ago when she volunteered to raise money for Extra Hands after learning about the disease when one of her father’s friends died of ALS. She said Mr. Orchard’s response to her offer of help not only inspired her, it made her fall in love with him.
“When I asked him when he wanted to get started, he said ‘yesterday’,” Williamson said. “I was impressed by how much he appreciated the people around him. There really was no other choice, but to love him.”
From Wall Street to Russia, Mr. Orchard left his mark, but the most indelible mark was the result of his heroic efforts on behalf of people living with ALS. In addition to providing hundreds of families with “extra hands” every day, he had given ALS much-needed publicity. He had been profiled in the media several times, including on an “American Hero” segment on the CBS News “Early Show” in May of 2005. In an interview with Channel 5 less than a year ago, Mr. Orchard said: "For me the worst part is that I can't put my arms around the people I love. The rest, like not walking, or eating, or talking, is a breeze compared to that."
A Family Remembers
Mr. Orchard, who was divorced, is survived by his friend and love, Kristen Williamson; his parents, Lois and Robert Orchard, St. Louis; his sister, Connie Hoffman (husband Peter); his brothers Jay Orchard and Harry (wife Betsy) Orchard, all of St. Louis; and his nieces and nephews, Drew and Claire Hoffman, and Ethan, Lily and Poppy Orchard.
Mr. Orchard’s ashes will be spread at the confluence of the Mississippi and Missouri Rivers in the footsteps of his hero, Meriwether Lewis, in a private ceremony.
A memorial service is planned for late July. In lieu of flowers, contributions may be made to The Jack Orchard Fund at John Burroughs School, Attention: Jim Kemp, 755 South Price Road, St. Louis, Mo. 63124, or The ALS Association, St. Louis Regional Chapter, in honor of Jack Orchard and Extra Hands, 2258 Weldon Parkway, St. Louis, Mo. 63146.
Gloria Ross is the head of Okara Communications and the storywriter for AfterWords, an obituary-writing and production service.