Testimonials and reasons to be part of Huntington events - Online Session in Spanish

– Written by the Moving Forward team on 25th April 2024

Our recent online session in Spanish held on March 14 was a sincere invitation to join future Huntington meetings. The Moving Forward & Fepaeh team organized a successful session focused on sharing experiences and reasons to participate in international conferences on Huntington’s disease.

The session had over 50 registrations and connected us with an enthusiastic audience of more than 34 people, who joined us live via Zoom.


The talk was characterized by its inspiring atmosphere and the richness of the spontaneous testimonials shared by five people who had recently attended the International Young Adult Conference (HDYO) or the EHA Conference 2023. Laura, Lola&Aída, Marta, Patricia, Alex, and “Chinche” Lafuente passionately shared their experiences, highlighting the value of personal and real connections with other Huntington’s families, learning about the latest advances in research, and the feeling of being part of a global community united by a common cause.

“I felt supported throughout the entire conference. But what really exceeded my expectations was the slide showing all the pharmaceutical companies that are already working on the disease, because I didn't know that. I mean, I didn't think there were so many. And I remember when I saw that, I was quite shocked.”
Patricia Cortés

They also talked about how their fears, reservations, health or logistical obstacles that initially prevented them from participating were ultimately overcome.

“I also want to encourage everyone not to be afraid or have those feelings before going to a conference. Just go for it without thinking twice.”
Laura Carpio

A particularly emotional moment was the spontaneous participation of Francesco Villa, who was following the session from Italy, where he lives. His contribution added an international perspective and reinforced the spirit of collaboration that characterizes the Huntington’s community. He showed live that there are no linguistic or geographical barriers that prevent us from understanding each other, because, as he himself said, “you are reading people’s eyes, identifying people’s eyes.”

The session demonstrated the power of Huntington’s disease events to strengthen a sense of belonging and empower people.

“Well, I encourage, at least from my personal experience, to participate in this type of conference. It was very useful and beneficial for me to leave my Huntington's disease circle for a few days and dive headfirst into Huntington's disease, but from a different perspective. And I returned to Seville with much more strength after participating."
Javier ‘Chinche’ Lafuente

The response from participants was very positive, with numerous expressions of gratitude and a renewed interest in participating in future initiatives, such as the one that will take place from September 25 to 28, 2025, in Bucharest (Romania). Find out all the information you need to attend the next EHA Conference here, and if you have any questions or need additional information about this event, please send us an email at ruth@ehamovingforward.org

And… don’t miss the next online session!

Assisted Reproduction and DGPP in Huntington’s Disease:

📆 Date: May 14

⏰Time: 5:30 p.m. (CET)

➡️Topic: We will explore the reproductive options available to individuals and families affected by Huntington’s disease, with a specific and concrete focus on Preimplantation Genetic Diagnosis (PGD).

In this online session in Spanish, we will hear from Cristina, a member of a HD family who is currently pregnant with her second child thanks to PGD. To provide a comprehensive perspective, we will also be joined by the medical professionals who have supported her through this complex process: her gynecologist and her geneticist. They will provide valuable information about the PGD process and other reproductive strategies.

You can register here to attend our next online session: https://bit.ly/huntingtonydgp