Advocacy
Huntington's
Disease.
HD is rewriting my family. I'm writing back.
What is Huntington's Disease?
Huntington's disease (HD) is a rare, hereditary neurodegenerative disorder that causes the progressive breakdown of nerve cells in the brain. It affects movement, cognition and behaviour, and there is currently no cure.
Each child of a parent with HD has a 50% chance of inheriting the gene. It doesn't just affect one person. It reshapes entire families, generation after generation.
Symptoms typically appear between ages 30 and 50 and worsen over 10 to 25 years. They include involuntary movements, difficulty with balance and coordination, cognitive decline, and emotional changes including depression and anxiety.
Why this matters to me
"My father has it. My younger brother has it. I do not. That one truth is both the relief and the wound I've been living with."
Living with a family history of HD means living with uncertainty. It means watching a disease slowly take hold and knowing there is a chance it could be your future too. It's a weight that many carry silently, and that silence is exactly what I'm working to break.
I'm currently writing a book that explores the raw, unfiltered reality of growing up in a family affected by Huntington's: the grief, the resilience, the complexity of genetic testing, and the fierce love that holds it all together.
What I'm doing about it
Writing a Book
A deeply personal memoir about growing up inside a Huntington's family. Raw, honest, and written to make people feel less alone.
HD IRL
Small in-person events for people under 35 inside HD families — away from clinics and conferences. Co-organizing with youth leaders who know what it means to be forged by this disease.
Board of Directors, AHF
Sitting on the Board of the Association Huntington France — strengthening the French HD community and connecting local efforts to the broader European network.
Raising Awareness
Using this platform to educate, push for research funding, and break the silence around genetic diseases. Our stories deserve to be heard.
Resources
Open a folder to explore.
If this resonates with you, if you want to collaborate, share your story, or simply talk, I'm here.
Reach out