Learning About Other Diseases Improves HD Advocacy

B.J. Viau avatar

by B.J. Viau |

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As a Huntington’s disease (HD) community advocate, I am always trying to listen and learn from anyone who may help the cause. This means listening to people outside the HD community, as well as those who are part of it.

Earlier this year, I was connected to a young adult who was impacted by early-onset familial Alzheimer’s disease (EOFAD). At the time, I hadn’t heard of EOFAD. I just assumed Alzheimer’s disease only affected the elderly, and that there wasn’t any type of genetic connection. So I was a bit mind-blown to learn that what a young person affected by EOFAD may experience was almost identical to what a young person affected by HD might experience.

Last month, I posted a few questions about HD on Twitter, and I received a response from a young person who is in the familial amyotrophic lateral sclerosis (FALS) community. I had previously read a little bit about FALS, but I didn’t know much. Again, I found similarities to HD.

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This month, I organized a group phone call with two people from the FALS community, one from EOFAD, and two from the HD community, including me. It was inspiring to meet others outside the HD community who deal with similar issues, barriers, and obstacles to their health, and I was encouraged by what they were doing about it.

Although the three conditions don’t have identical symptoms, we identified a few common issues that we plan to dig into. They include clear guidance of biomarker endpoints for clinical trials, genetic testing and counseling experiences, insurance barriers, employment discrimination, the affordability of preimplantation genetic testing on embryos created via in vitro fertilization, clinical trial availability for pre-symptomatic people, and the lack of effective treatments. These aren’t issues that can be addressed all at once, but during our talk we agreed that we could do more working together than we could in our own silos.

I’m looking forward to the next call with this group, and hope to identify a few other conditions that we may have in common, and areas where we could advocate together. We have to learn more from one another and work together to accomplish the many things that we as rare disease communities face.

These are unique and exciting times for people who are at risk for neurodegenerative disorders, and I hope change is possible through advocacy.

I hope anyone affected by HD, FALS, or EOFAD will reach out to me, and that anyone from the HD community will join the newly formed conversation. I will continue to write about this in future columns. Please share in the comments below.

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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

Seth Rotberg avatar

Seth Rotberg

Thanks for taking the time to write this BJ! I definitely agree that we can learn from these similar health conditions who are dealing with similar issues as we do in the HD community. I would love to keep the conversation going by inviting people to join in on the conversation on our Discord channel: https://discord.gg/F4kJsBaQ

The more we can make the HD community aware about the issues, the better chance we have to come together and speed up research in HD!

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B.J. Viau avatar

B.J. Viau

Thanks for reading and commenting, Seth! I look forward to joining the conversation on DISCORD too.

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Betty Jean Crump avatar

Betty Jean Crump

I have been trying to find a trial for my husband, Lawrence R. Crump to participate in. He has been diagnosed approximately five years ago. He will be eight seven this year and has some of the symptoms. He was told that he has forty one markers related to the disease (Mild) Anyone having any information regarding trials, please be in touch. Many thanks for any information that you may have.

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B.J. Viau avatar

B.J. Viau

Hi Betty - thanks for reading for the reaching out. Can you send me an email to [email protected] and I can work to connect you to possible study sites that your husband may qualify for.

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