Message to Families
Like other parents with a child with Riboflavin Transporter Deficiency, we’ve been riding an emotional roller coaster. After heartbreaking years of watching our daughter Julia lose the ability to hear, see, talk, walk and breathe, we finally received a diagnosis of RTD Type II in October 2013. Thankfully, we were informed that recently discovered treatments were available to slow down, and maybe even halt, the relentless progression of RTD in some patients. However, we were also told that little was known about RTD, there was no cure and the future of our daughter was uncertain. In addition, little information was available on how to deal with the damage that had been caused by RTD and give Julia the best life possible.
Each parent experiences this emotional roller coaster, and we are bound together by the journey as we search for better care and, ultimately, a cure.
Cure RTD was formed in response to the precise needs of those who live with Riboflavin Transporter Deficiency and their families. From funding the first study using living motor units derived from human induced pluripotent stem cells to explore various treatment options, to raising awareness at medical conferences worldwide, we believe in fighting RTD from every angle. At Cure RTD, we care about you, your children and the quality of the life you live together. And we are striving to make the future better.
It’s been our philosophy from the beginning to pursue better medical and therapeutic care, band together to find a cure and build a stronger RTD community. Saving children affected by RTD has become our life’s work, and together we can be the best advocates for our children.
Please join us and share in the journey of working together to find a cure.
Founder and Science Director, Cure RTD