My Family’s Battle Against Huntington’s Disease

My Family’s HD Story:

To get our family’s full story, go to the following site:

Here’s the short version:

My wife, Jill, and daughter, Alexus, are gene positive for Huntington’s disease (HD). Jill was diagnosed in 2018 at the age of 41. Alexus found out in 2019 when she was 22. This site is dedicated to telling their story and to battling HD, which is a rare, inherited disease that causes the progressive degeneration of nerve cells in the brain. The symptoms of HD are commonly described as having Alzheimer’s, Parkinson’s and ALS (Lou Gehrig’s disease) – simultaneously. The disease has a comprehensive negative impact on someone’s functional abilities and usually results in movement, thinking and psychiatric disorders. 

There is no cure on the horizon for those with HD.

But we can at least try to make life a little bit easier for families battling it. One way to help is to ask the U.S. Congress to pass the Huntington’s Disease Parity Act (S 868 / HR 2050). My wife came up with the idea to create a viral video campaign to inspire the U.S. Congress to pass the HD Parity Act. The Huntington’s Disease Society of America (HDSA) explains the act this way:

“The HD Parity Act will waive the two-year Medicare waiting period, as well as waive the 5-month benefit waiting period for individuals with Huntington’s disease (HD) accessing Social Security Disability Insurance (SSDI). Medicare’s two-year waiting period is particularly devastating for people with HD.  Once a person with HD is deemed eligible for SSDI benefits, a process which can take years even with Compassionate Allowance Listings, they are forced to wait two years to receive Medicare benefits.  During the two-year wait, HD’s destructive impact cognitively and physically robs the person of their ability to live independently. Additionally, the genetic nature of the disease and its onset during prime working years has a tremendous financial impact on families with HD, forcing families to wait even five months to receive their financial benefit once they qualify for SSDI is too long.”

Contacting your local Congressman/woman to encourage them to pass the act would be helpful too:

Here’s How to Participate in the HD Viral Video Challenge:

+ Create a simplified megaphone. Cupping your hands together words, as does an empty paper towel tube or taping a piece of paper and folding in such a way that it resembles a megaphone.

+ Say your first name and identify if you know anyone who has HD. (Even if you don’t know anyone, we still appreciate your participation for a good cause.) Then yell out the following: “Congress, hear our plea! Pass the HD Parity!” Then challenge someone you know to participate in the challenge and then send them the link.

Thank you!!

Two Challenge Video Samples:

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