HudsonAlpha Institute for Biotechnology is helping provide answers for patients through its Hero Fund. Established by an anonymous donation to the HudsonAlpha Foundation, the Hero Fund helps patients at Smith Family Clinic for Genomic Medicine who need, but cannot afford, access to genomic medicine.
Smith Family Clinic, powered by HudsonAlpha, Children’s of Alabama and UAB Medicine, uses whole genome sequencing to diagnose rare, undiagnosed and misdiagnosed diseases.
“Although whole genome sequencing is a comprehensive test that offers information not found in one comprehensive tool elsewhere, it is not often covered by insurance. Through the Hero Fund, qualified clinic patients have the opportunity to find answers without the financial burden,” said Howard Jacob, PhD, executive vice president for genomic medicine.
“We named it the Hero Fund because in our world, those individuals who have these rare conditions are day-to-day heroes who really are fighting that problem every day,” said David Bick, MD, a clinical geneticist and the medical director for Smith Family Clinic. “When we find answers for these patients, it’s one of the greatest satisfactions of working here at the clinic.”
One such patient is Jim Wall of Huntsville, Ala. Jim has struggled with back problems, balance problems and swallowing issues for more than 20 years, but just ignored the symptoms and accepted them as a part of life. After two decades of unexplained symptoms and appointments with countless specialists and clinics, Jim finally had a complete answer.
“Dr. Bick diagnosed me with spastic paraplegia type 7,” said Jim. “It was nice to find out exactly what was wrong. Without the Hero Fund, I would have never gone through this and found out the true diagnosis.”
Jim tells the full story of finding a diagnosis in the following video featuring Dr. Bick and Carol Aiken, clinical operations administrator for Smith Family Clinic.
“When I’m able to call someone back and let them know that they’re approved, it brings tears to their eyes,” said Aiken, “because they knew they needed to have whole genome sequencing, but the financial means were not within reach. I can’t express to you in words what it means to make that phone call.”
To refer a patient to Smith Family Clinic, call 1-256-327-9640.