Huntington’s disease is a rare neurodegenerative brain disease that is like having ALS, Parkinson’s and Alzheimer’s all at the same time.
There is no cure, no treatment. Some of the symptoms of HD can be treated, but eventually a Huntington’s patient will be basically trapped inside their own bodies, relying on the care of others.
Relying on others to clean them, feed them or eventually take care of a feeding tube situation because the patient will no longer have the ability to chew food, swallow and keep from choking.
A child of a Huntington’s patient has a 50/50 chance of inheriting the disease. Or worse, inheriting juvenile Huntington’s.
It’s sad and in some ways sick that a parent’s prayer with Huntington’s is that you pray your child doesn’t have the juvenile version, because that typically means their life will be over much quicker than having the adult version (which usually manifests between the ages of 30 to 50 years old).
This sounds like a horrible situation to most, but to families like mine, we are living this nightmare.
My husband, Nathan, was diagnosed 10 years ago this month. April 15, 2016 to be exact.
That’s the day we knew our normal life was over. Don’t get me wrong, Nathan still has a quality of life. He can still be present with myself, our children and family and friends. But it’s not the same.
Something we’ve fought for since his diagnosis has been awareness. We even came up with a phrase that we use quite often. “With awareness comes funding, with funding comes research with research comes Hope for a treatment, or even better…a cure.”
I can’t tell you how often I have said that. How often I’ve spoken in public, in private, to our federal leaders, the Food and Drug Administration and anyone who will listen about Huntington’s and our prayer and wish for a treatment.
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In September 2025, it was announced that a potential treatment may have been found. In October 2025, the FDA decided it wasn’t going to even listen to the data from that trial. No review at all.
Since then, myself and many others like me have been fighting to have our Huntington’s Disease community heard.
So that brings me to why I am writing this, myself and many like me are asking you to help us get the attention of our federal leaders.
Our Huntington’s disease families are asking of our federal leaders to connect with the FDA to request fair reviews of potential drugs for Huntington’s disease as well as other rare diseases.
We want Congress to act now and urge the FDA to utilize to the fullest extent on the Accelerated Approval that Congress has provided. We want to be sure that promising therapies for Huntington’s disease get a timely and fair review.
We’re asking our families, friends and people who just want to help to contact their federal leaders on April 13, 2026, which has been designated as Huntington’s Disease Day of Action.
Huntington’s Disease Society of America has created links and editable letters to help with this ask, which can be found here: Huntington’s Disease Day of Action – Huntington’s Disease Society of America.
Our HD families are asking for help, we don’t want to lose any more family members.
Many of us want to grow old with our spouses, watch our children grow up and live happy productive lives without the fear of Huntington’s. We want to stop Huntington’s so that no other husband, wife, mother, father, brother, sister or child of HD has to live with this disease in any way, shape form or fashion.
With your help, we hope and pray we can make this a possibility.
The views expressed by contributors are their own and not the views of SuperTalk Mississippi Media.
