30 years ago, on March 23, a landmark Cell article was published, describing that the mutation in the gene responsible for Huntington’s disease had been identified for the first time. This discovery was possible thanks to the collaboration between scientists from different countries, –James F. Gusella and collaborators (The US-Venezuela collaborative research group)- and the information provided by researcher & HD advocate Nancy Wexler, after 20 years of study of a very large “family” from Zulia State in Venezuela, whose support -together with that of a “family” from Ohio (USA)- was crucial to be able to establish a genealogy that allowed the reaching this crucial landmark. Huntingtin (HTT) was the first gene causative for a genetic neurological disease, and whose molecular change could be mapped to a specific location on chromosome 4. For Ignacio Muñoz-Sanjuán, president of Factor-H, “Only the link created between scientists and the affected population could make possible a similar advance in the history of humanity. However, we have not reached the end of the road. It is time to thank everyone, but especially the very extensive family from Venezuela whose members still live in conditions of extreme poverty in towns surrounding the west side of Lake Maracaibo.”
Following an initiative from Jimmy Pollard, an HD advocate and a Board member of Factor-H, who shared it with Muñoz-Sanjuán & a small team that included Cristina Ferreira, Katrin Barth, and Asunción Martínez, set to work on what became the creation of the first Huntington’s Gratitude Day, which will include sharing images on Instagram or Twitter with the hashtag #hdgratitudeday23, but, also a request for donations specifically aimed to help the descendants of that Venezuelan family. The celebration consists of thanking the scientific community, patients and caregivers, making with their hands a Huntington’s H, which is transformed into a heart. The logo was conceived by Sofia Sena, daughter of Cristina Ferreira and adapted by graphic designer Manyee Lieu….. The newsletter of EHDN – the European Huntington’s Disease Network – echoed the Factor-H initiative and published it in its March issue.
HOW TO PARTICIPATE? #hdgratitudeday23
To participate in Huntington’s Gratitude Day, all you have to do is make the “symbol of the day” with your hands. It begins with the hands in parallel, palms facing each other to make the sticks of the “H” of Huntington’s, the ‘H’ of Hope. The thumbs are joined below the rest of the fingers and finally, the rest of the fingers are lowered except the indexes, to form a heart… then you take a picture, and you post it with the #hdgratitude23 Instagram tag. Make the post public and it will appear on the Factor-H website!
It can be just you, it can be you together with your family, with your team at work, just… make the “H-Hand gesture” and… give thanks to everybody for working together to make life easier for people and families affected as well.