Svein Olaf Olsen
I joined the HD-community in 2008 as HD was present i the family of my wife. First as a Board Member in Norway. Then European Huntington Association 5-6 years ago. I have to daughters, Maiken (25) and Jannike (26). My wife, Astri, is also involved in HD. She is President of European Huntington Association. My background is entrepreneurship. I have started several companies in different industries and operated in several countries. At the moment I am focusing on Artificial Intelligence in a company called Anzyz Tevhnologies. I am living in the southern part of Norway – Kristiansand. My engagement for HD started when I met Michael Hayden in Denmark. I decided in this meeting to work for the day to come when we have an effective HD-drug. At that time I hope we in the International Huntington Association can be one strong global HD-voice and that we have the best network and collaboration across Boarders and different cultures. As an old hippie – love and peace – we need everyone onboard for a better HD-future!
Vice President IHA
Xi Cao (China)
Xi Cao is the founder and president of the Chinese HD Association. She is from an HD family and she has been working with HD community in China since 2013. She has been helping the HD community in China to fight for better social support and medical systems.
Danuta Lis (Poland)
I have been President of the Polish Huntington’s Disease Association since 2008, and have undertaken continuous training and education by attending various courses and workshops in the area of managing non-government organisations. This has led to the introduction of beneficial developments and strengthening the Associations position in Poland and abroad. In 2011 I became a Board Member of the International Huntington Association and have now taken on the role of Treasurer. Acting on behalf of patients and their families, it has been 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.
Board Member (Canada)
My first introduction to Huntington disease was through a very compelling piece on “60 Minutes” that profoundly affected me. I have since learned 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 me to this role as CEO, 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 as I join this extraordinary community. I have a long experience in the charitable sectors encompassed a range of organizations. I am focused on voulenteers. They are the life blood of the sector. I have had the great good fortune to collaborate with many talented and committed individuals whose passion and expertise advanced important initiatives.
International Development Officer (Belgium)
Bea de Schepper
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.
Board Member (Oman)
Mohammed is born in 1962. He is from a HD family. His grandmother,his mother, her two brother and two sisters are effected by HD. He has found HD in his family in four generations. Mohammed is also familiar with juvenile HD. Mohammed’s bakground is banking, and he worked in a bank up to 2014. Four years ago Mohammed decided to dedicate his time to help his family. He is a head of Oman Huntington Disease. Mohammed is also a member of the Board of The Huntington Arabic Coalition where the HD-community try to create an umbrella organisation for Arabic speaking countries (22 Nations). Mr al-Hajri has lived in Africa, Tanzania, for decades. Therefore, he speaks Swahili fluently. He also speaks Arabic in the same way, English and Italian are other languages he speaks
Board Member (Brasil)
Aparecida Alencar has been a board member of the Huntington Brazil Association since 2006 and coordinator of the Huntington Brazil Association-Alagoas. She was born in Feira Grande, a small city in Northeastern Brazil, and although she was not familiar with DH, he lived from childhood with several people affected by a neurological disease, at the time without diagnosis. She decided to investigate, being able to discover in 2005, that it was Huntington’s Disease. This result revealed the largest cluster and the highest prevalence of DH in Brazil. Currently supports families and students interested in researching HD.
Board Member (Argentina)
I am the wife of an HD patient, my husband died 5 years ago, and I have three children at risk. I joined APAEH when my husband was diagnosed. As most HD patients was not diagnosed when he was in an early stage, but finally, when he was diagnosed, by consulting several doctors, we find a doctor giving us advices. In this period I was in contact with APAEH. Since then I am part of the team. The main goal of APAEH is to provide assistance and advice to the EH 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, doctors. We get requests from all over the country. We also focus on good treatment and to live a as healthy as possible.There is a facebook page, updated with all the news, in spanish. When possible APAEH organizes congress with patients, doctors and other professions related to HD.
Member of The Board (Observer, India)
Information Scientific Officer
My mother died with HD when I was twenty years old, and my brother also died with HD when he was 39 years old. I had a DNA test which was negative and with this knowledge my two sons and their wives went on to have children. As senior officer of the Dutch Army and Airforce I had to keep the illness in my family a secret.I was involved in the establishment of the HD Association in the Netherlands in 1976 and also assisted the late Marjorie Guthrie with the establishment of the International Huntington Association in 1979. After the death of Marjorie in 1983 I became involved in establishing many HD Associations all over the world, and have held the position of Vice President and President of the International Huntington Association. I have also given education sessions about HD in nursing schools and nursing homes and was also involved in the establishment of a specialised nursing homes for HD patients. in the Netherlands.
IHA Juvenile Disease group
Barbara D’Alessio – Chair
I am Graduated in Law at Sapienza University in Rome and specialized in Marketing Management. I have been working in 15 years in nonprofit Management, Communications and Development Departments. Since 2012 I have been working at Fondazione Lega Italiana Ricerca Huntington, Rome – The Italian League for Research on Huntington and related diseases is a not for profit Foundation, whose main aim are:
1. Support clinical research on Huntington and related diseases and 2. Offer the best possible care to affected and at-risk people and their families. LIRH Foundation is member of the main international networks involved in HD research all over the world. Working in LIHR has given me the opportunity to meet children with Juvenile Huntington Disease (JHD). This has caught my attention and giving me the opportunity to know more about JHD. JHD is a rare disease and IHA 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 advices to parents raising children with JHD. You are more than welcome to get in contact with me by mail: