THE UNCERTAINTY OF WAITING
First informal meeting of pre-symptomatic or possible carriers of Huntington's Disease in Spain
Written by the Moving Forward Team on March 16th2022
On May 7th it will be held the first informal meeting addressing the group of pre-symptomatic or possible carriers of Huntington’s disease (HD) in Spain. The meeting will take place from 16:00 to 20:00 at Espacio Imaguru in Madrid and is promoted by the European Huntington Association (EHA), and by the Asociación Corea de Huntington Española (ACHE).
This initiative is part of Moving Forward, a project specifically aimed at these two groups. To confirm your presence, and due to the health measures related to the pandemic, please fill in this registration form
In the quest for the rights of persons and families affected by Huntington’s Disease, often the actions and therapies are organized by and for persons who have already begun to manifest symptoms, as they are usually the most immediate priority group to attend.
But on many occasions we forget about the people who already know that their diagnosis is positive or who still do not know the answer about their HD status. The main goal of this meeting is to bring together people from different territories who share the same situation so that they can chat, get to know each other, connect, and build new stories together. There will be group dynamics and discussions, joined-up thinking and relaxed conversations, with finger food and drinks to make the day more enjoyable.
The meeting attendees will be able to speak about any HD-related topic that worries them, although the focus is predictive genetic testing, namely the dilemmas that arise among those who are considering whether to test or not, and how those who have already taken that step and have undergone the test feel about that. Saúl Martínez-Horta, a neuropsychologist with an expertise in Huntington’s Disease, will join us to moderate this debate, answer any questions that may arise and provide updates about ongoing HD trials and therapies.
Participation is open to persons from all over Spain. Attendees can bring their children, as there will be activities and games to entertain them. To encourage participation and promote inclusion, we will be able to support those who have difficulties to join us for economic reasons. If this is your case, please send an e-mail to Ruth@ehamovingforward.org and together we will find a way to overcome this obstacle.
We hope that this day can make these specific HD groups more visible. We want to help develop synergies and common goals, so that a space can be created in which people affected or at risk for HD are empowered protagonists of their own story and have their requests heard because they have a single voice.
We are looking forward to sharing this day with you, join us!