The Brazilian Huntington Association (ABH – Associação Brasil Huntington) is incredibly active and has been conducting numerous initiatives for the community. This level of commitment is vital because it not only benefits those affected by the disease but also raises the much-needed awareness about Huntington’s Disease. This article serves as a summary of their recent activities, highlighting their dedication to the cause.
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Press conference with journalists at Casa dos Raros (House of Rare) – September 22
ABH (Associação Brasil Huntington) coordinator and psychologist, Tatiana Henrique, was, this past 22nd of September, accompanied by neurologist and member of the ABH Scientific Committee, Dr. Gustavo Franklin, on a visit to the House of Rare (https://cdr.org.br/) of Porto Alegre (RS), South region of the country, to speak, explain and raise awareness among journalists of different Brazil regions about Huntington’s Disease.
Dr. Gustavo Franklin shared valuable information aout HD aspects, including its causes, symptoms and treatments. Fundamental concepts for the Huntington understanding. Tatiana talked in an overall view about the psychological, social and economic challenges faced by families with HD, highlighting specially the challenges faced in the daily life and in public policy. As a result of this initiative, a series of reports about Huntington are being broadcasted in the press, from the North to the South of the country.
The purpose of the given speeches and interviews is to mobilize the society for the discussion of the necessary public policies for an adequate reception of people with Huntington’s Disease and their necessities, as well as raise awareness throughout society to search for more empathy and understanding.
The Centre for Comprehensive Care and Training in Rare Diseases was built in Porto Alegre by Instituto Genética para Todos and by Casa Hunter, two organizations of civil society that develop projects in the fiel of rare genetic diseases.
The Casa dos Raros (House of Rare) emerged to be an interconnected network ofemerged to be an interconnected network providing comprehensive care for individuals with rare diseases. The goal is to promote comprehensive and multidisciplinary assistance to patients and their families, starting with fast and accurate diagnosis, advanced treatments, and clinical research focused on rare genetic diseases.
Family gathering at the Casa dos Raros (House of Rare) – September 22
After the meeting with the journalists, we invited the relatives from Porto Alegre (RS) and the surrounding area for a roundtable discussion in the same space (kindly provided) by the Casa dos Raros (House of Rare), also with the presence of Tatiana and Dr. Gustavo Franklin. You can find the live stream of this meeting on ABH Instagram page.
26th Anniversary of ABH and National Huntington’s Disease Day Celebration – September 27
As Tatiana mentioned earlier, on September 27, ABH held a live stream with the participation of Dr. Gustavo Franklin, Dra. Filipa Júlio, and, of course, Tatiana herself. More information about the live stream and academic descriptions of the participants can be found in this Instagram post, and the recorded broadcast is available on ABH YouTube channel.
Awareness Action during a Brazilian Championship Match – September 30
Huntington’s Disease takes the field to score a goal for awareness in a match between Flamengo and Bahia on Saturday, September 30.
Patients and families took to the field carrying a banner with the words: “As serious as the disease itself is ignorance about it. Hidden No More! September 27 is National Huntington’s Disease Awareness Day.” More information in this Instagram post.
Mário Marra, ABH cause ambassador, journalist, and ESPN Brazil commentator, shared a courageous and sensitive testimonial about his relationship with Huntington’s Disease, which was broadcast on ESPN Brazil’s Sportscenter program this Sunday. You can watch the video that the journalist shared on ABH’s Instagram and the ESPN article in this post.
Video – What do you know about Huntington’s Disease?
Inspired by a campaign from the Huntington Society of Canada recorded in 2017, we asked people on the street what they know about Huntington’s Disease, and most had no idea. But they were familiar with other diseases like depression, Parkinson’s Disease, schizophrenia, and Alzheimer’s Disease. In the end, we revealed a shocking truth: having Huntington’s Disease is like living with symptoms of all these diseases at once.
You can check out the results in this link: https://www.youtube.com/watch?v=TrQAD8ikze0.