In 1974, the founder of the Canadian Huntington´s Society, Ralph Walker and the founder of the British Huntington´s Disease society, Mauveen Jones attended the annual meeting of the American Huntington´s Disease society. This international meeting was followed by an international conference held by a research group in the Netherlands in 1977 that was organized by the Dutch Huntington´s Society.
These international meetings showed the necessity of founding an international association, in order to assemble the different Huntington societies into one entity. Thusly, the International Huntington´s Disease Association was established in 1979, at the international meeting in Oxford, England, that was organized by the Huntington´s Disease Association of the United Kingdom.
In 2003, the world congress on Huntington´s Disease was planned in Toronto, Canada. This would have been the first meeting between scientists and members/contacts of the International Huntington´s Association. Due to unforeseen circumstances, the board members of the International Huntington´s Association and scientists held an improvised meeting.
One of the leading Huntington´s researcher in the world, Dr. Nance Wexler made the following comment in a speech 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. 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!”
The International Huntington´s Association, alongside our members believe that our organisation is a key factor in achieving that goal.
Since 1977, the IHA has held biennial meetings in different member countries up until 2013. Since then, no worldwide meetings have been arranged.
The Board (2018 - 2020)
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.
Robin Markowitz (Canada)
Robin´s first introduction to Huntington disease was through a very compelling piece on “60 Minutes” that profoundly affected her. Since then, she learnt of the international community of Huntington families. Their determination, resilience, strength in facing adversity and enduring belief that a treatment is not an ‘if’ but a ‘when’ drew her to the role as the CEO of Huntington Society of Canada. This is a critical time in the organization’s history. The work on genetic fairness, the clinical trial readiness and the continued support required to meet families’ needs energizes me her in this extraordinary community. She has a long experience in the charitable sector encompassed in a range of organizations. Robin´s main focus is on volunteers. They are the life blood of the sector. Robin has had the great fortune to collaborate with many talented and committed individuals whose passion and expertise advanced important initiatives.
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.
Information Scientific Officer
Gerit´s mother died of huntington´s Disease when he was twenty years old. His brother also died of HD when he was 39 years old. Gerit took a DNA test that tested negative of the HD gene, and the knowledge that the test provided, his two sons decided to have children with their wives. As a senior officer of the Dutch Army and Airforce, he had to keep the illness that affected his family a secret. In 1976, Gerit was involved in establishing the HD association in the Netherlands and he also assisted the late Marjorie Guthrie in creating the International Huntington´s Association in 1979. After Marjorie´s death in 1983, Gerit was involved in creating many HD Associations’ worldwide and he has also held the positions of Vice President and President of the International Huntington Association. In addition, Gerit has given education sessions about HD in nursing schools and nursing homes and was involved in the establishment of a specialised nursing homes for HD patients in the Netherlands.
Juvenile Disease Group (Chair)
Barbara is a graduate in law, with a specialization in marketing management at Sapienza University in Rome. She has worked 15 years in non-profit management, communications and development. Since 2012, she has been working at Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome. The Italian League for Research on Huntington and related diseases is a non-profit Foundation, whose main aims are to Support clinical research on Huntington and related diseases and Offer the best possible care to affected and at-risk people and their families. The LIRH foundation is a member of all the main international networks that are involved in HD research worldwide. Working in LIRH has given Barbara the opportunity to meet children with Juvenile Huntington Disease (JHD). Working with JHD has intrigued Barbara, giving her the opportunity to learn more about JHD. JHD is a rare disease and the International Huntington´s Association has decided to focus on early onset of Huntington as we need a Global focus to do research and clinical trials. We also need a Global Focus to collect all knowledge about the disease and give good advice to parents raising children with JHD.