Let’s Do More to Fight Huntington’s Disease

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by Carlos Briceño |

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It’s not enough.

That’s what I kept thinking when my wife, Jill, and I were watching the 7th Annual Freeze HD virtual event on Oct. 16. This entertaining and emotional benefit featured a silent auction, music performances, and celebrities who shared how Huntington’s disease (HD) has affected family members or friends, and how they all wanted to raise awareness, money, support, and hope to find a cure.

I appreciated everything the Freeze HD hosts and the guests shared. Their passion about overcoming HD was admirable and inspiring. The money they raised — more than $211,000 — was amazing.

But it’s not enough.

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Here’s what I mean: Imagine thinking you have done enough to protect your family from a home invasion by having a gate, security cameras, and dogs as deterrents. And then thieves manage to break in anyway. (I saw news reporting that this actually happened recently.)

When a war is being fought — and believe me, HD is a highly skilled attack force intent on destroying the mind and the body — how do you respond to such an enemy invasion? Do you just accept it? Do you instantly surrender? Or do you use every resource at your disposal to fight?

I don’t want my wife and daughter, who are gene-positive for HD, to suffer from this disease. I imagine everyone reading this doesn’t want their loved ones to suffer, either. So what can we do? How do we fight back?

At the Freeze HD event, co-host Scott Porter noted that people diagnosed with HD in the U.S. must wait two years before they can receive Medicare benefits. He believed this to be an injustice. So, he pointed out, the Huntington’s Disease Society of America is advocating for the passage of the Huntington’s Disease Parity Act (HR 2050, SB 868), which would waive the two-year waiting period for Medicare and the five-month wait for Social Security Disability Insurance benefits, as Huntington’s Disease News‘ Mary Chapman explained last August.

You can help the effort by making your voice be heard on Capitol Hill to encourage political leaders to pass the HD Parity Act.

But if several dozen readers do this, it’s not enough. If several hundred do it, it’s still not enough. We need thousands. We need an army to fight an army.

Whatever we are doing, it’s not enough. The enemy is winning. So, please, let’s do more. We have to do more.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Kristen Dean-Grossmann avatar

Kristen Dean-Grossmann

I just emailed my Congresspeople!

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Carlos Briceño avatar

Carlos Briceño

Thank you!!

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Carlos Briceño avatar

Carlos Briceño

You are awesome. Thank you!

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Wanda Henley avatar

Wanda Henley

Is there somewhere where you can view the October 16th Freeze HD program? I did not know about this.

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Carlos Briceño avatar

Carlos Briceño

Forgive the delay in responding. My life has been super hectic. Here is a link where you can watch the Freeze HD program on YouTube: https://www.youtube.com/watch?v=nRBKWwQG4Bc

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