Uncomplicating HD Research: Mission Accomplished
– Written by the Moving Forward Team on November 28th 2022
Earlier this month, we promoted the second Moving Forward meeting in Spain. This event was based on the results of the feedback survey filled by the attendees of the first Moving Forward face-to-face meeting we held in May in Madrid, which was entitled “The Uncertainty of Waiting”. Thus, this second Moving Forward meeting was focused on HD research, since this was the main topic people said they wanted to hear about in future events
On November 12th, in close collaboration with AVAEH – Asociación Valenciana de Enfermedad de Huntington and the Instituto de Investigación Sanitaria La Fe we were able to bring together a fantastic group of Spanish clinicians and researchers who are completely committed to providing the best care possible to HD families and to finding effective therapeutic options for those impacted by HD (photos 1 and 2)
Photo 1- Meeting Poster
Photo 2 – The Team behind the “Uncomplicating HD Research” Meeting
This meeting was held in the top of the notch headquarters of the IIS La Fe Institut in Valencia and moderated by Eva Calabuig, the President of AVAEH. We had the privilege of having the Scientific Director of IIS La Fe, Guillermo Sanz Santillana, and José Manuel Ventura Cerdá, the General Director of Pharmacy and Medical Devices of the Valencian Community, making a relevant introduction about the current situation of the care and research provided to the HD community in Spain and the important role of the HD lay organizations in this process. Astri Arnesen, the president of the EHA – European Huntington Association also said a few words about the goals of the meeting and the importance of these initiatives to the European HD landscape – photos 3 and 4.
Photo 3 –The Meeting Opening Session
Photo 4 –A Crowded Room
More than 100 representatives from HD families came from different parts of Spain (Galicia, Madrid, Catalonia, Extremadura and Valencia) to learn in a simple and family-friendly way about all the HD scientific updates and have a hands-on experience of the different research studies and trials that are being run at the IIS La Fe Institut. Different representatives from different Spanish HD Associations also joined us in this event, such as ACMAH – Asociación Catalana de la Malaltia de Huntington, AEXEH – Asociación Huntington Extremeña, ACHE – Asociación Corea de Huntington Española and, of course, AVAEH – Asociación Valenciana de Enfermedad de Huntington. All these organizations were a fundamental piece for the success of the day – photo 5.
Photo 5 – Some of the Meeting Attendees
Carmen Peiró, the HD neurologist of La Fe Hospital in Valencia, made a nice summary of all the ongoing and planned HD studies and trials that were presented at the last EHDN – European Huntington’s Disease Network meeting held in September in Bologna. After this interesting presentation, we invited three HD family members, Maria Jar, Ruth Gutierrez and Asuncion Martinez, to share their inspiring personal stories and incredible commitment with the HD community.
After this plenary session, the meeting attendees were split into four different groups and started a didactic stroll through the different HD research units of the IIS La Fe Institut. The participants were able to meet the researchers up close and personal and got a true sense of what happens inside a research/clinical department working in Huntington’s disease. There was a guided visit to the Worm Lab, with Ana Pilar Gómez, Andrea Carranza and Rafael Vázquez (photos 6 and 7)
Photo 6 – Hands-on Experience at the Worm Lab
Photo 7 – Listening Carefully about Worms
There was also a visit to the Genetic Station with Chema Millán (photo 8), a visit to the Biobank Station with Raquel Amigo (photo 9) and a visit to the Enroll-HD Station with Asunción Martínez, Francisco Castera, Selene Capodarca and Claudia Perandones (photo 10).
Photo 8 – Listening Carefully about HD Genetics
Photo 9 – Listening Carefully about the HD Brain Bank
Photo 10 – Listening Carefully about the Enroll-HD study
Finally, Ruth Blanco, the Moving Forward national coordinator in Spain, had the opportunity to present the Moving Forward Project. Ruth presented the work done so far and announced the new actions to be implemented in the near future. The new sections of the Moving Forward webpage, namely the Forum, and the Bookshelf were mentioned. The launching of a new Online Psychological Support Service for People At Risk for HD and People with Premanifest HD was received with great enthusiasm by the meeting attendees, who had the chance to meet and speak with the psychologist Francisco Iruela, one of the professionals in charge of the service (photos 11 and 12).
Photo 11 – Ruth Blanco presenting the Moving Forward project
Photo 12 – Ruth Blanco and Francisco Iruela during the Online Psychological Service presentation
Like in all the meetings of South European countries, the food was one of the most important participants of the “Uncomplicating HD Research” event. During the coffee break, we were able to taste a Valencian delicatessen, Coca en Llanda, while we celebrated the 10th anniversary of the Enroll-HD Project (photo 13). Later, during lunch time, we had the opportunity to chat, connect and share experiences around some delicious Valencian paellas – photo 14
Photo 13 – A coffee break full of sweets (but a bit scarce in coffee!)
Photo 14 – Socializing around the typical Valencian Paella
Some weeks later, our hearts are still full of all the positive learnings and exchanges of this day. Therefore, we can only encourage you to join us at our next face-to-face meeting and live this powerful experience together with us! Finally, it is important to say that all presentations were recorded by the Moving Forward team and will soon be at your disposal.
Last but not the least, we would like to express our big and warm thank you to all the HD families who came to IIS La Fe despite the harsh weather conditions. And also express our big and warm thank you to the IIS La Fe team for their empathy, openness and great cooperation that helped us to make this meeting possible.
Photo Acknowledgements: Communication Team of the Instituto de Investigación Sanitaria La Fe and Mireia Sanchez