Seeking new strategies in the war against Huntington’s disease

I joined the war against Huntington’s disease (HD) back in 1995, after my mom, Debbie, underwent genetic testing that confirmed she was gene-positive for HD. Her father also carried the genetic mutation, but he passed away in 1990, when I was only 3 years old. I was just a kid, so until my mom was diagnosed, I didn’t understand that the disease could potentially affect her, my sister, and me.

I’ve shared in my columns and public talks that my parents decided to tackle Huntington’s head-on. The first step was telling my sister and me about Mom’s genetic test results and what they meant for our family. The second was getting us involved in the war against HD.

Not long after my mom’s diagnosis, my dad, Bryan, flew to New York City to visit the national office of the Huntington’s Disease Society of America (HDSA). He went to Barbara Boyle, then the nonprofit’s CEO, and demanded the organization find answers. According to my dad, Boyle responded, “We need your help, so what are you going to do, Bryan?”

That interaction inspired him to take on a new leadership and advocacy role in our family. When I was 9 and asked to hold a basketball fundraising event, he didn’t waver, even though it was a major commitment. Starting in 1996, for 15 years, we hosted an annual community Hoopathon to raise money for HDSA. We thought we were making a difference in the battle against HD.

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Over the years, we improved our weaponry and strategy, and our army grew from tens to hundreds, but the enemy kept moving the line on us. My mom continued to decline, progressively losing all of her abilities until she passed away in 2011. HD friends we’ve met on the battlefield have also lost their abilities and their lives.

After my mom’s death, all the time and energy we put into saving her felt meaningless. “Frustrating” doesn’t even come close to describing it. But even though my sister and I were both fortunate to test negative for HD, we keep fighting in honor of our mom and the many people who test positive.

Changing tactics

Over time, though, I’ve started wondering if we’re fighting the battle with the wrong weapons. Although the Hoopathon raised thousands of dollars each year, a 2020 JAMA article notes that the average cost of bringing a new drug to market is estimated to be about $985.3 million. We were throwing pebbles at a monster that was bigger and stronger than we ever imagined.

I don’t regret holding the Hoopathon events, as those days put the biggest smile on my mom’s face. But I wish I realized earlier in my fundraising days that if we really want to make a difference for those with HD, I needed to find some bigger weapons.

I share this realization because I see so many intelligent and talented people in the HD community who are spending their time throwing pebbles when they could be making a bigger impact. My hypothesis is that many of these people don’t even know where to find bigger weapons or who to aim them at, but I’m here to help.

To take down the HD enemy, we need more people to advocate for policy changes, more guidance from the U.S. Food and Drug Administration, and more investment from pharmaceutical companies.

We need innovators.

Too many casualties

It’s been over 12 years since my mom passed away, and I don’t feel like we’re significantly closer to advancements in treatment or policy changes that will save lives. If we continue on the same course and at the same pace, we’ll continue losing so many people to HD.

I’ve tried to do some basic math to come up with a statistic I’ve never seen anyone share. According to HDSA, about 41,000 people in the U.S. are now experiencing Huntington’s symptoms. The average life expectancy for HD patients is 15-20 years after the onset of clinical symptoms. If we divide 41,000 people by 15-20 years, it’s possible that between 2,050 and 2,733 people die from HD each year in the U.S. — which would equate to 5.6 to 7.5 deaths each day.

I can’t keep being a community advocate without acknowledging that people are dying on the battlefield every single day. It’s time to change that. It’s time to gather a new group of soldiers who can think of strategic new ways to accelerate treatment development and, eventually, find a cure. Together, we can save lives.

Reach out to me or leave a comment below if you want to discuss new ways we can battle HD together.

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.