– Written by the Moving Forward team on the 21st November 2023

On November 11th, the fourth Moving Forward meeting in Spain took place in one of the warmest Spanish cities, Malaga. The meeting, with the topic “Past, Present and Future in HD research”, brought together more than 50 HD family members. Attendees came from almost all Andalusian provinces, Seville, Cadiz, Cordoba, Granada and Malaga, but also from other more distant Spanish cities, such as Barcelona, Valencia and Cantabria. The day was full of positive emotions and energy and, although there were some last-minute changes, everything went well.

Astri Arnesen, President of the European Huntington Association, opened the meeting with a welcome message, which she recorded in perfect Spanish and was really appreciated by the meeting attendees.

The message emphasized what we have achieved and what is still to come on the 30th anniversary of the HD gene discovery You can watch it here.

Saúl Martínez-Horta connected with us from Barcelona, filling in for José Manuel Garcia Moreno, who could not join the meeting. He gave us a masterly talk in which he summarized the most important clinical consequences of the HD gene discovery. The Moving Forward team wants to thank Saúl for joining us with such short notice.

The impact of the HD gene discovery on HD basic research was described by Jose J. Lucas, a prestigious biologist and researcher from the Severo Ochoa Molecular Biology Centre in Madrid. We would like to share with you his words after attending this conference:

“(…) For me it has been a very enriching experience and I am very happy to have participated. As I said in my talk, sometimes it seems that basic researchers and patients/families are two separate worlds when, in reality, we always have each other in mind…. It was very special to share and hear your first-hand testimonies during the day (…)”.

The meeting resorted again to the new technologies to have Ignacio Muñoz San Juan live from Los Angeles (USA) to explain the situation of families in Latin America living in densely populated areas with the highest prevalence of HD worldwide. We also learned about the tireless humanitarian work Ignacio is carrying out there with his foundation Factor-H.

During the coffee break, we had time to talk, meet and connect in the fabulous Patio de los Naranjos del Centro La Noria de Málaga.

The Moving Forward team would like to thank the La Noria team for all their support and availability to make this meeting happen. Also of vital importance was the collaboration of some HD families living in Malaga, who facilitated the logistics to make this day possible. A huge thank you to them.

Another goal of this meeting was to provide feedback to the Spanish HD community about the EHA conference in Blankenberge. The lessons learned are not only theoretical information, the personal experiences of those who attend this kind of international meetings are also very valuable.

Javier “Chinche” Lafuente (carer of his wife Carmen) shared his experience as an attendee and speaker at the EHA conference in Belgium. Chinche touched the audience with his experiences as an informal carer for his wife, who is now in an advanced HD stage.

After Chinche’s talk, Irene Sánchez, a basic researcher, offered us, in simple language, all the updates about the HD studies and trials that have been conducted over the last 5 years.

This was her feedback about the meeting: “(…)The scientific meetings that I attended so far did not have patients as an audience and that makes the talk take on a special feeling. It is really gratifying to be able to make a contribution and to feel that it is useful to the families (…)”.

The day was closed by Ruth Blanco, coordinator of the Moving Forward Project in Spain, who presented the latest initiatives that the Moving Forward team has conducted in the country and provided the latest updates about clinical trials presented by the pharmaceutical companies at the EHA conference.

The meeting ended with a Q&A session. Afterwards, a small group of the meeting attendees shared a light dinner to keep connecting and sharing inspiring personal experiences. In January, you will be able to access the recording of some of the talks at this meeting.  Stay tuned!