In October of last year, Stuart Obermann and his family made a gift to the city of Huntsville, Alabama through the Eric S. Obermann Foundation he founded in 2006 to honor his son who was fighting ALS. With this generous donation, the city planted approximately 270 native trees and shrubs creating a new forest on Aldridge Creek Greenway. The Eric Obermann Linear Forest will eventually grow to shade more than one-half mile of greenway, providing enjoyment to residents and visitors for years to come, keeping Eric’s memory alive in the community where he was raised.
While ALS is labeled a “rare disease” in the medical field, those who are personally touched by the disease tend to feel quite differently. When Stuart’s son was diagnosed, he learned what a lot of people with ALS eventually find out: once you've met one person with the disease and understand the devastation it causes, you find as you're talking to people that you know a lot of people who have been touched by it.
In 2002, shortly after his son Eric was diagnosed with the disease at age 20, Stuart got involved with The ALS Association. Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group, meeting at a local library and restaurants to get together and talk about all things related to ALS, providing support, sharing ideas and resources, and leaning on each other for help dealing with the daily challenges that come while living with ALS.
After doing some research online, Stuart and the group learned about the National Advocacy Conference held each May in Washington so several them traveled to D.C. in 2003 to learn more. “We really enjoyed the advocacy component of that event, but while we were there, we learned about this network of chapters, and I believe at the time there were perhaps around 20 chapters serving patients throughout the country, but none serving Alabama” he said. So the group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter in 2004. Stuart took on the role of founding chairperson. Marcia, a nurse, also served on the board and built their care services program.
Stuart, a businessperson and an engineer, and Marcia, both took sabbaticals from their careers for a decade to develop the chapter and help Eric just deal through his difficult journey. “It allowed us to focus on something that could help him and others living with ALS,” he said. “And, that helped us cope, I think, or at least distract us from the grief and the loss that was coming at us every day.”
Stuart served for 10 years as the chairperson of the chapter but due to term limits rolled off their board. “After Eric passed and my term expired, I decided I cared deeply about the Association and the families that we were serving and decided to continue on in a volunteer mode,” he said. He served as the first chairperson of the board of representatives on the national level when it was formed in 2010, for two and a half years. When his term as an officer expired, he was elected onto the board of trustees, and served 8 years in that role.
“Many of the volunteers for the Association, both within the chapter boards as well as at the national level with the board of trustees, are people like myself who had been, or are currently dealing with ALS, with a family member, or themselves, are a patient, or have lost a loved one,” said Stuart. “So, we've seen how that works. We understand the feelings and the sense of urgency that every family member has. We all want the cure yesterday. And, we take that very seriously.”
In March 2020, Stuart was offered yet another opportunity to make a difference for people living with ALS. His own personal experience with his son’s ALS journey made him uniquely qualified to take on the position of Vice President of Field Operations for the Association. In this role he helps provide support to the current network of 39 chapters serving people living with ALS in all 50 states. “The Chapters are vital to the delivery of our care services programs to ALS families across the country. This is at the core of our mission – and these programs are a lifeline for people living with ALS,” said Stuart.
Eric remains Stuart’s “guiding light” and motivation for all he does with the Association and in his local community. When asked what Stuart would like to say to families in the ALS community he replied, “I would just like to say a word of thanks to our hundreds of volunteers and thousands of donors who support the mission and the work of The ALS Association. Your support is invaluable to help us do our job, and together with your support, we hope that we will soon live in a world without ALS. So, thank you.”