Sai is a university student in the United States. He sold HD-branded cookies. He shovels snow for neighbours and donates the money. He shows up. He does what he can, when he can — and that, in its own way, moves our community forward.
Saija is from Finland. She became involved with the Finnish Huntington Association as a family member living with the reality of HD every day. Over time, she went from board member to secretary to chairwoman. She now sits on EHA’s own board as Treasurer and has represented the HD community at the European Federation of Neurological Associations. What started as personal experience became a decade-long commitment to making sure other families don’t feel alone.
Alexa is French-American and lives in Germany. She volunteers for the Association Huntington France (AHF) and is part of HD IRL — a community group for young people connected to HD. Her volunteering looks like connection: gathering people, building friendships across borders, making sure the community feels real and alive, not just online.
Claudia, from Italy, has recently become the President of the Italian Huntington Association and is also an HDYO Ambassador. In March 2025, she was at the International Young Adults Congress in Prague — surrounded by young people from across the world who all understand, in one way or another, what it means to grow up alongside HD.
Annie and Marisa are both based in the United States and work within the HD Community Advisory Board (HD-CAB) — Annie as an advocate, Marisa as coordinator. This is patient advocacy at its most direct: ensuring the voice of people living with HD shapes the research and decisions that affect them.
Jenna, also from the US, is the HDYO Coordinator, supporting the global network of young people connected to HD. Victoria, a Venezuelan living in Poland, volunteers for the International Huntington Association and regularly participates in activities with the Polish Huntington Association — proof that you don’t have to be from a country to belong to its community. And Daniela, from Portugal, joined as IHA’s Communication Manager — using her professional skills to serve a cause she believes in.
This is the most common thing we hear from people who want to help but haven’t taken the step yet. Here are the other reasons people often hold back — and what our volunteers would say in response.
The truth is, very few of our volunteers felt fully ready when they started. They started anyway — with a small action, a first email, a question asked at a webinar. And over time, many of them found something they didn’t expect: a community that felt like home, a sense of purpose that grew alongside their commitment, and the feeling that their presence made a difference.
Volunteering is not about being an expert. It is about showing up — in whatever way works for you, at whatever level feels right.
One opportunity we want to highlight in particular: the EHA Conference 2027. Our conferences are not just events to attend — they are events that people help build and shape. If you’d like to get involved, there are many ways to do so: helping with logistics and organisation, volunteering on the day, sharing your personal story in a session, or contributing your professional knowledge as a speaker or panellist. Whether you have five minutes of lived experience worth sharing or years of expertise to offer, there is a role for you. It’s one of the most energising ways to connect with the wider HD community — and to walk away feeling that you were genuinely part of something.
If you want to be part of it, we’d love to hear from you.
For EHA: communication@eurohuntington.org For IHA: daniela@iha-huntington.org
– Article written by Bruna Costa