INSPIRING VIDEOS IN SPANISH ABOUT HUNTINGTON'S DISEASE RESEARCH

– Written by the Moving Forward Team on 9th February 2024  

In November 2023, we held the 4th Moving Forward Meeting in Spain. We met in Malaga, at the Centro de Innovación Social La Noria, and enjoyed an unforgettable day, full of valuable learnings on many aspects of Huntington’s disease.

We are very happy to share with you the recordings of some of the interesting presentations of the meeting. You will find the links to the several contents discussed in Malaga.

Dr. Saúl Martínez Horta, (neuropsychologist/researcher at Hospital Sant-Pau, Barcelona) led us on a masterly tour during his online presentation, with a unique perspective on what HD is, the implications it entails, the fundamental role of research and how things have changed in the last three decades.

We were also accompanied by Dr. Jose Javier Lucas, who is a renowned researcher at the Centro de Biología Molecular Severo Ochoa de la Universidad Autónoma de Madrid, who has more than 25 years of experience in HD basic research. In his talk, we had the opportunity to learn about the molecular mechanisms and biological aspects involved in this disease. It was also really exciting to know how one of his basic research studies, about the role of thiamine and biotin in HD, has finally been translated into a clinical trial with persons with HD which will be carried out in three Spanish hospitals, starting at the end of 2023. 

Research is always a fundamental topic for persons with Huntington’s disease and their families, and fortunately there are many trials and clinical studies being carried out to try to find an effective treatment for HD. 

Dra. Irene Sánchez, who traveled from Barcelona to be present at this conference, showed us, in a simple and easily understandable language, the status of the several studies that have been conducted over the past 5 years in HD and those that are currently underway from various pharmaceutical companies and research groups. It was undoubtedly a really interesting and very pedagogical presentation.

We could not forget that 2023 marked the 30th anniversary of the publication of the discovery of the gene underlying Huntington’s disease. The Moving Forward project has carried out an online campaign to increase the visibility, dissemination and awareness  about this discovery and its profound impact on the entire community

In this meeting, we had the opportunity to connect in a video conference with Dr. Nacho Muñoz San Juan, a Valencian living in Los Angeles (USA) and founder of Factor-H, who presented us the situation of Latin American families in the communities that led to the discovery of the gene by the hand of the researcher Nancy Wexler and her team (back in the 80’s and 90’s).

It was really moving to learn about the great work being done by the Factor-H foundation to help people with HD and their families in the most underserved and poor areas of Venezuela, Colombia and Peru.

As always, we will be delighted to share with you news about the next face-to-face meetings, but in the meantime we hope you find useful and interesting the recordings that we have shared with you today from the last 2023 Moving Forward meeting in Spain.

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