About Us

Hi, my name is Ryan and I'm the founder of the End Huntington's Disease Foundation and I appreciate you coming to our website. I have a unique experience with Huntington's Disease. My father-in-law had HD and passed away from complications related to HD in 2019. My wife was diagnosed with HD in 2016. The disease is progressing and has limited her ability to function on her own and her daily activities. Her paternal grandmother had the disease and numerous other relatives. She and I also have four children that are at-risk for Huntington's Disease. So as you can imagine, this is quite personal.

However, that is not what makes my perspective unique. Thousands of families are affected by HD and have had similar experiences. My unique perspective comes from the fact that my maternal Grandmother also had HD, who inherited it from her father, my Great Grandfather. Given the rare nature of HD, consider the odds of two individuals from HD families getting married — it is less than one tenth of one percent.

My grandparents had 4 kids, each of which had a 50% chance of carrying the gene mutation. To get to the point, my mom and all of her siblings tested negative. They all won the genetic coin flip. Think about the consequences of this: Huntington's Disease has been eliminated from my Grandparents' descendants for good. Their 4 children, 13 grandchildren, numerous great-grandchildren, and generations to come are no longer at risk.

Now comes the exciting part. The technology exists to "rig" the coin flip. Through genetic testing (PGD) and in-vitro fertilization (IVF), we can guarantee the coin flip comes up negative and replicate this outcome in every family that has HD. But we can't do it alone. We need those at-risk to come forward and get tested. We need those that test positive to participate in the PGD-IVF process. And we need your support.