Hi, 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 currently has HD. He is experiencing late stage HD and is being cared for in a facility. My wife Mira was diagnosed with HD in 2017. She is in the early to mid stages of the disease progression, which is starting to affect her daily activities. Her paternal grandmother had the disease and numerous other relatives. Mira 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 me 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. I won’t bore you with the calculation, but it is very rare, less than 1 tenth of one percent chance of occurring. However, the story is different on my side of the family. My grandparents had 4 kids, each of which had a 50% chance of carrying the gene mutation and being HD positive. Now that 50% chance is a large sample average. If you’ve ever spent time flipping a coin, you know that although the probability of either side of a coin coming up after a flip is 50-50, in the short-run you can get 5, 6, or 10 in a row (depending on how much time you want to spend flipping a coin). Here’s a link to a simulation to illustrate the point. So to get to the point, my mom and all of her siblings tested negative. They all won the genetic coin flip. Once again, something quite rare. Think about the consequences of this. HD has been eliminated from my Grandparents descendents 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 and in vitro fertilization, we can guarantee the coin flip comes up negative and replicate this rare occurrence where all the offspring are negative 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 to help fund this endeavor.