Meet the IHA BOARD
I live in Madrid, Spain, where I was born in 1962.
My mom suffered HD and had 7 daughters. I went through the predictive test and I am not a carrier of the HD gene.
Three of my sisters and one nephew (26y old) are now suffering from the disease. Since my mom was diagnosed (1978) I was searching for information and solutions on my own, as there was no HDA established in my country. In 1989 I joined the IHA as contact person for Spain. I met representatives of so many countries and I had never been alone again in this fight. I established the HDA in Spain and had been representing my country, the European HDA and the IHA, whenever needed. Because my mother language is Spanish I am especially focused on helping to develop the HDA in Latin America, but I am also involved in the development, distribution and update of the Ethic Guidelines. I am also part of the Task Force on the Definition of HD from the families point of view.
Vice President IHA
Bev Heim-Myers joined the Huntington Society of Canada in 2010 as Chief Executive Officer. Currently Bev is the Chair of the Canadian Coalition for Genetic Fairness. Bev is the past Treasurer of the Governing Council of the Health Charities Coalition Canada (HCCC) and is an active member of HCCC, the Neurological Health Charities of Canada (NHCC) and the National Population Health Study of Neurological Conditions (NPHSNC). Bev is also an Executive member of the Board of the International Huntington Association (IHA) acting as Vice President. In 2015 Bev received the Health Charities of Canada Award of Distinction in recognition of leadership and outstanding support to the charitable health sector.
In 2016 Bev received the American Society of Human Genetics, Advocacy Award, together with Senator James Cowan. This award is in recognition of facilitating public awareness of genetics issues and for work done to move the protection of genetic test information forward in Canada.
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.
I have been an active member of the Huntington’s Association in Western Australia since 1999 and the Australian National Association since 2005. In 2005 I joined the International Huntington Association as Secretary and from 2011 to 2016 was the IHA President.
In 1992 my husband was diagnosed symptomatic with HD and passed away in 2009. In 1999 and 2000, both our daughters went through the Predictive Testing programme, receiving a positive result and are now symptomatic.
My focus is on the many challenges facing all members of HD families and to hope that by research, education and sharing of information the outlook for future generations will be more optimistic.
IHA International Development Officer
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.
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.
Member at Large
My name is Filipa Júlio, I am Portuguese and I am currently doing my PhD in Neuropsychology.
I have been involved with Huntington’s disease patients and families since 2007. In 2008, I joined the Huntington’s Portuguese Association Board, of which I am currently the Vice-President. In 2011 I became a Member at Large of the International Huntington Association Board. In 2012, I have joined the European Huntington Association Board, as Secretary. I have also been helping HDBuzz and HDYO with translations into Portuguese since both sites were created.
Member at Large
Dr Živilė Navikienė
My whole life I was searching the meaning of life and I wanted to be useful for society but I didn’t imagine that my wish became for me stressful as I am mother of three children who are at HD risk because my husband is suffering from HD.
I established the Lithuanian Huntington Disease Association which is the first HD Association in the Baltic countries. As I am PhD of Social Sciences my personal and professional interest are focused on questions which are based on quality of life for the HD patient family and especially the needs of children.
Member at Large
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.
At the heart of her experience is a firm passion for helping people face health challenges head on, always with dignity, understanding and hope.
IHA Office Manager
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.