Dr. Nancy Wexler, one of the world’s leading researchers into Huntington’s Disease sums up our reason for being at the annual meeting of the Huntington’s Society of Canada:
“Individual people can make an impact, but a group like this, with members all across this country make a bigger impact, and an international group, makes an even bigger impact still. There is absolutely no question that the Huntington movement we are all a part of is considered one of the most successful associations in the entire world. And what are we? We are individuals getting together and saying this disease cannot get me down. I am going to conquer it. And we are going to conquer Huntington’s Disease soon. We are going to do it in both our and our children’s lifetime.”
We at the International Huntington Association believe that our organisation is a key factor in achieving that goal.
Svein Olaf Olsen (Norway)
Svein has a background in entrepreneurship, having started a number of companies in several countries. Svein 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.
Six years ago, Svein joined the 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 (China)
Xi Cao is the Founder and president of the Chinese Huntington´s Association. Xi comes from an HD family and has been working with the HD community in China since 2013. She has helped the HD community in china since 2013 to fight for better social support and medical systems.
Danuta Lis (Poland)
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 organisations. This has 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.
Louise Vetter (USA)
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, 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.
International Development Officer
Bea de Schepper (Belgium)
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, Flanders, Belgium, 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 – 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.
Mohammed al-Hajri (Oman)
Mohammed was born in 1962, and he speaks Swahili and Arabic fluently. He also speaks English and Italian. His background is in banking, and he worked in a bank up to 2014. Four years ago, he decided to dedicate his time to help his family because he is from a 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 organisation for the Arabic speaking countries (22 Nations).
Aparacida Alcanar (Brazil)
Aparecida Alencar has been a board member of the Huntington Brazil Association since 2006 as well as the coordinator of the Huntington Brazil Association-Alagoas. 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 dragonised 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 Krinski (Argentina)
Claudia´s husband died of Huntington´s Disease, and she has three children that are at risk of contracting Huntington´s 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.