Cure RTD Foundation

Riboflavin Transporter Deficiency (RTD) is a rare, life-shortening, neurodegenerative genetic disorder with onset occurring most often in childhood.  RTD was formerly known as Brown-Vialetto-Van Laere (BVVL) or Fazio-Londe (FL) syndrome.  First reported as an “infantile” form of ALS,  RTD affects motor and sensory nerve cells (neurons), taking away a person’s ability to hear, see, move, walk, eat and breathe.  RTD knows no ethnic boundaries and cases of RTD have been reported in every corner of the globe.  Despite the physically devastating effects of the disease, the mental capabilities of people with RTD remain completely intact. Daily treatment with riboflavin (vitamin B2) has recently shown great promise in slowing down the progression of RTD. More research is desperately needed to advance treatment, which will eventually lead to a cure for this devastating disease.

We are a global volunteer organization dedicated to saving lives through education, advances in treatment, and the search for a cure for Riboflavin Transporter Deficiency (RTD).  The Cure RTD Foundation is a public, 501(c)(3), non-profit, tax-exempt organization based in the United States.  The foundation was launched in 2016 by families affected by RTD that made the unanimous decision to work together towards a common goal of a cure for RTD.

• We pursue the most innovative research and make sure that it receives proper funding through directly funding research.
• We create an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment.
• We provide relentless support to families, caregivers, and healthcare providers.
• We build collaborations with organizations dedicated to advancing treatments for RTD.

Due to the potential progressive nature of the disease and the promise of advancing treatment and discovering a cure, there is urgency to our efforts.