In less than a year, RISE for LCHAD has turned one Carmel family’s experience with a rare metabolic disorder into an effort that has raised more than $90,000 for research.
The nonprofit was created to raise awareness and advance research into long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency, or LCHAD, a rare genetic metabolic disorder that prevents the body from properly breaking down certain fats for energy. Without careful management, fasting, illness or inadequate calories can trigger a potentially life-threatening metabolic crisis, with complications that can include muscle breakdown and problems involving the heart and liver.
For RISE founder Nikki Gray and her husband, Dave Roth, the severity of the disease is part of everyday life. Roth’s 9-year-old daughter, Jillian, was diagnosed with LCHAD within days of her birth after dangerously low blood sugar sent her to the NICU…