Getting Involved in Community Events Is Hard for Me

Alexus Jones avatar

by Alexus Jones |

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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.


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.


Yaniva avatar


Hi, this is not my real name or the email i normally use. Im from israel and a lerand a few weeks ago that i have it. I dont want to say my real name beacuse i didnt told my family yet. Im not going to tell them becuse it will break tham, But i feel so sad and broken. Im such a happy person and im afried it will change me.

Im married and i thought we will hold hands when we 70, but now i think that he will be all my book but im just a chapter in is story and i think that i will bring kids (in ivf of course) that will have to see whats happen to their mom and ofcourse i think about my brothers who might have this.
I wrote you becuse i understand u. Becuse i need to know that im not the only one that feel like that and also beacuse i dont what to hear about the sudness becuse it just makes me cry. Right now i just want to read about research (and its not easy for me becuse every thing is in english.)
I wish their will be a cure but until that will happen i hope we (all of us) live a happy life❤


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