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.