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.”