Genesis BCS Founder and President Debra Schindler-Boultinghouse has been named a Trustee on the National Board of the United Mitochondrial Disease Foundation (UMDF), an organization dedicated to raising funds for mitochondrial disease research and increased awareness. Schindler-Boultinghouse has been active in the fight against mitochondrial disease since her youngest son, Christopher, passed away from the disease in 2004.
Schindler-Boultinghouse was chosen for one of four spots on the Board reserved for those who have been affected by the disease. Other members include doctors, scientists, and business leaders.
“It’s very personal for me,” Schindler-Boultinghouse said, “it always has been.”
Schindler-Boultinghouse began what would grow into the Houston Chapter of the UMDF in 2004, shortly after her son’s death from mitochondrial disease. The following year as an official UMDF chapter, they held the inaugural Christopher’s Heart Fun Run, a 5K to raise money for mitochondrial research.
In the years following, the Houston chapter became one of the most active chapters in the country, raising almost $700,000 to date, and creating a plethora of events and subgroups to address various needs of the chapter members, most of whom are families of children suffering from the debilitating disease.
“There were a lot of efforts we made in the initial years that really took off and spun off into bigger and better outreach efforts on their own,” Schindler-Boultinghouse explained. “I think of things like Morgan’s Wonderland, an amazing theme park in San Antonio designed specifically for physically challenged children. Or the Fun Run, which has turned into the Energy for Life Walk-a-Thon and has really taken on a life of its own.”
Schindler-Boultinghouse said the lesson she’d learned most in her years as a leader in the Houston chapter was finding the balance between raising awareness, raising funds for research, instituting support groups for mitochondria disease sufferers and their families, and building a feeling of community between mitochondrial patients, their families, the medical community, and the support efforts from UMDF.
That lesson will serve Schindler-Boultinghouse well as she steps into her roll on the Board of Trustees, which meets four times per year.
“There’s no doubt that the number one goal is and always will be finding a cure. But in the meantime, we’ve got great kids with great families whose lives can be really enriched through UMDF,” Schindler-Boultinghouse said. “That’s the perspective I plan to bring to the table. I think it’s a good one, and I’m really excited and honored to be working with a group of people who have so much ability to positively affect the lives of so many people.”
For more information on mitochondrial disease, or to learn how to get involved in the fight, visit www.umdf.org.