I am distantly related to members of this family who has been individually and personally affected by a horrible disease. Reynold and Henry Deater were the first people afflicted and I remember them as a child slowly losing first toes and fingers and then half their legs. No one in the medical field could diagnose the disease, even after they volunteered themselves to be "guinea pigs" in a hospital in Philadelphia, undergoing horrific treatments including radiation to find a cure.
Review from Guidestar
This is an amazing family, one of which I am very blessed to be a part of. When I found out at 16 that I had this disease, it could have affected me in one of two ways-give up and give in, or adapt and move on. I chose the ladder. Having the deater disease for over thirty years there have been good days and bad, but the good always out weigh the bad. I wear braces that allow me to stay very active. I have lost all of my fingertips except for my thumbs from infection. And just three weeks ago I had a total knee replacement, which was a huge success, thank God, and I am walking better than I had in 10 months. All that to say, we are very close to finding a cure that would prevent our future generations from getting this. What I have gone through and what so many in my family have endured can be stopped. Won't you please help us with this final stage to blot out this disease. If you can't support us financially, your prayers are always welcome. thanks!
Review from Guidestar
Deater Foundation, Inc. was birthed twenty years ago out of a vision by two siblings from a very large extended family that was afflicted with a debiliting, inherited disease now known as HSAN1...who wanted to be able to financially support the on-going medical research of the disease in hopes of expediting a treatment or a cure in the future. This very large family was very committed to the goals and mission of Deater Foundation, Inc. Not only did this very large family volunteer to donate blood for DNA samples, they also gave of their finances--sacrificially--in order to enable DFI to meet its goals. This large family has been blessed, over the years, with renowned doctors and researchers, who have worked tirelessly in order find answers to their questions. A major breakthrough occurred in 2000 when the research team discovered the location of the defective gene that causes HSAN1 on Chromosome 9. Since that time, the research has been able to focus on a treatment and/or a cure for HSAN1. I remain committed to DFI because I am hopeful that a treatment and/or a cure for HSAN1 is on the horizon.
I am proud to help out with DFI because I have seen the medical research successfully meet with milestones over the past 20 years. I am excited to hear about a new study with affected family members that once again delivers hope for family member treatment and those with HSAN1 (both present and future).