“The decision to donate our son Ian’s organs and tissue was the only bright spot in the darkest day of our lives. Donations, like Ian’s, allow teams of researchers to find new treatments and cures for diseases that plague all of our families.”
“In the season of gift giving, if you or someone you know has a rare disease, consider offering down the road something worth more than money to the National Disease Research Interchange (NDRI). On the day of his death, Larry Taylor's great brain and assorted other assets were funneled through NDRI to multiple ALS researchers. The remainder, as ashes, traveled to his remembrance (he would have been bemused to see TSA "wanding" the container) and will be taking a spring trip to grace several treasured places.”
Dr. Zieske of Harvard University’s Schepens Eye Research Institute, told me they only get about 10 infant corneas a year and would request more if they could. Infant eyes are worth their weight in gold… because of their potential to regenerate. In fact, they said they were likely still using my son’s cells while I was there in the building! It was so healing.”
Among other things, living with a rare disease teaches you not only to advocate for quality healthcare for yourself, but also to capitalize on any available opportunity to help find a cure or treatment for others living with the same rare disease. That’s why NDRI was near the top of my “To Call” list when, in 2010, I received the call for my lung transplant. A couple of years prior, during the lung transplant evaluation process, I registered with NDRI. I knew that when the time came, by placing the call to let them know I was headed into surgery, my tissue would be made available to the many scientists and researchers working tirelessly to find a cure for lymphangioleiomyomatosis (LAM). What better way to thank them than to provide the tissue they so desperately need to continue their research? Thank you, NDRI, for offering me this opportunity to be a part of that research.