Getting Involved in Community Events Is Hard for Me

Alexus Jones avatar

by Alexus Jones |

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teamwork, community events, fears, mom, tattoo

I’ve written before that I was unsure if I was ready to get involved in Huntington’s disease community events. It’s been difficult for me to determine if the emotional cost is worth the risk.

A few months ago, I finally decided I was ready to get involved. My mom has already been diagnosed, I have the gene, and I even write a column. If I’m not ready now, when will I ever be? What put me over the edge, though, was the chance to connect with someone that could relate to what I’m going through.

As a first step, I signed up to attend the Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress. There were so many sessions available over two days, and with Zoom fatigue, I knew I had to prioritize which ones I’d attend. To reduce the chance of overwhelming myself, I decided against any that I thought might be too emotional, such as the ones where people share their stories. 

I noticed there were several clinical trial events on the second day, and I decided to prioritize those. Currently, I work in healthcare consulting, and I often talk about therapies that are in clinical trials, so these sessions seemed right up my alley. On top of that, I am continuously holding out hope for a cure, so they also seemed like the most useful sessions.

In one of the first sessions, representatives from Roche gave an update on the GENERATION HD1 Phase 3 trial of its investigational therapy tominersen, a potential treatment for Huntington’s disease. I was a smidge sad when the speaker noted that the talk would be focused on patient experience rather than the results, but I also understood that most people spend far less time talking about clinical trials than I do. I thought the talk might be a tad boring, but maybe I would learn something new.

I was entirely mistaken. I was unprepared for how the talk would affect me emotionally. I was heartbroken to think that my mother’s life might depend on regularly receiving an intrathecal injection, an injection into the spinal canal. Terrified of needles, I was furious that this is what I’d have to hope for in my future. 

I broke down.

I was grateful the talk wasn’t in person. It wasn’t even halfway done when I had to close my computer. While I was still angry and devastated, at least I had hope.

When the news broke that Roche had paused the trial, that wave of devastation returned even stronger. I know the chances of clinical trials failing, and I know that Huntington’s is a hard problem to solve. That knowledge did not matter at that moment.

I have so much respect for people who attended that conference and stayed the entire time. I have so much respect for everyone in the Huntington’s disease community that wakes up every day and keeps moving. It’s a hard thing to do. For me to keep doing just that, I don’t think I’m quite ready to be fully involved in community events.

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