A Dra. Nancy Wexler, um dos principais pesquisadores do mundo na Doença de Huntington, resume a nossa razão para participar na reunião atual da Huntington's Society of Canada:
"As pessoas individuais podem criar um impacto, mas um grupo como este, com membros por todo este país criam um maior impacto, e um grupo internacional, cria um impacto ainda maior. Não há qualquer questão que o movimento de Huntington do qual fazemos todos parte é considerado uma das associações mais bem sucedidas de todo o mundo. E o que é que somos? Somos indivíduos que nos juntamos e dizemos «Esta doença não me pode abater. Eu vou vencê-la. E vamos vencer a Doença de Huntington em breve. Vamos fazê-lo não só na nossa duração de vida, como também na duração de vida das nossas crianças». "
Nós, na International Huntington Association, acreditamemos que a nossa organização é um fator chave em atingir esse objetivo.
Svein Olaf Olsen
Svein has a background in entrepreneurship, having started a number of companies in several countries. He currently works at Anzyz Technologies, focusing on Artificial Intelligence.
He joined the Huntington´s Disease community in 2008, first as a Member of the Board in Norway, due to the disease´s presence in his wife´s family.
Há seis anos, Svein juntou-se à European Huntington Association as a Board Member. Svein has two daughters, Maiken and Janikke with his wife Astri, who is also involved in the Huntington´s community and is the President of the European Huntington´s Association. His engagement started when he met Michael Hayden in Denmark. In this meeting, Svein was inspired to start working to find a drug that was effective for the disease. His vision for the International Huntington Association is that all the different Huntington´s Associations can be one strong global voice, and that we can collaborate across borders and different cultures, in order to build a strong network that helps both patients and families that are affected by HD.
Xi Cao é a Fundadora e Presidente da Chinese Huntington's Association. Xi vem de uma família com HD e tem trabalhado com a comunidade na China desde 2013. Ela ajudou a comunidade a lutar por melhor apoio social e melhores sistemas médicos.
Danuta has been the president of the Polish HD Association since 2008 and has undertaken continuous training and education by attending various courses and workshops on managing non-government organizations.
The courses and workshops have led to the introduction of beneficial developments and strengthening the Associations position in Poland and abroad. In 2011, Danuta became a Board Member of the International Huntington Association and has now taken on the role of Treasurer. She acts on behalf of patients and their families, making it possible to seek support in different environments so that patients and their caregivers can live a better life.
Estados Unidos da América
Louise Vetter is President & Chief Executive Officer of the Huntington’s Disease Society of America (HDSA), the largest public not-profit organization devoted to the fight against Huntington’s Disease (HD).
Since joining HDSA in 2009, she has led the expansion of the society’s reach with new initiatives to strengthen the web of support for HD families, advocate for better access to care for those affected by the disease, improve physician understanding of HD, and support research to bring new treatments to HD families. A leader in patient advocacy, Ms. Vetter serves as Treasurer of the Board of Directors of the American Brain Coalition, is a Member of the Board of the International Huntington Association, an active Member of the National Health Council and an Editorial Advisor to the Rare Disease Report.
Bea de Schepper
Oficial de Desenvolvimento Internacional
Bea understands very well the many challenges facing Huntington’s families with her grandfather, mother, two aunts, an uncle and her three sisters all passing away from Huntington’s Disease.
In 1974, Bea was a co-founder of the Huntington Liga VZW and Vice President and has been a very active member in all aspects of care for the Huntington’s Disease community. In 2002 Bea became a Board Member of the European Federation of Neurological Association. From 2004 to 2016, Bea was President of the European Huntington Association and has remained as a Member at large. In 1990 Bea became a Member of the International Huntington Association, and in 2016 became the International Development Officer, where she will continue to share her knowledge of HD and to assist in the development and setting up of new associations.
Four years ago, he decided to dedicate his time to help his family because he is from an HD family. His grandmother, his mother, her two brothers and two sisters are all affected by HD. Mohammed´s family has been affected by Huntington´s for four generations and he is also familiar with juvenile HD. He is now the head of Oman Huntington Disease Association. Mohammed is also a member of the Board of The Huntington Arabic Coalition, where the HD-community´s main goal is to create an umbrella organization for the Arabic speaking countries (22 nations).
She was born in Feira Grande, a small city in North-Eastern Brazil, and although she was not familiar with HD, she lived with several people affected by a neurological disease from her childhood, that were not diagnosed at the time. She decided to investigate and was able to discover in 2005 that it was Huntington’s Disease that affected them. Her results revealed the largest cluster and the highest prevalence of HD in Brazil. She currently supports families and students that are interested in researching HD.
Claudia´s husband died of Huntington´s Disease and she has three children that are at risk of contracting the disease. She joined APAEH (Argentinian HD Society) when her husband was diagnosed.
Her husband was not given an early diagnosis and after consulting several doctors, he was finally diagnosed. They found a doctor that advised them. During this period, Claudia contacted the APAEH, and has since been part of the team. The main goal of APAEH is to provide assistance and advice to the HD families. The contact may be through mail, telephone or a coffee meeting, depending on the availability of the family. The questions are more or less related to social security, pension and doctors. They get requests from all over the country. They also focus on good treatment and promoting a healthy lifestyle. There is a Facebook page, updated with all the news, in Spanish. When possible, APAEH organizes meetings with patients, doctors and other professions related to HD.