About Us
MISSION
With this, 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. We at the International Huntington Association believe that our organization is a key factor in achieving that goal.
Our Mission
Our Mission is to improve the lives of individuals and families who are affected globally by Huntington’s Disease.
Our Objectives
- Raise awareness of Huntington’s Disease
- Enable national associations so that they can provide support for local HD families
- Encourage cross border networks and exchange of know-how
- Promote active involvement in clinical research
- Advocate for treatment access
Board members
Svein Olaf Olsen
President
Norway
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.
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
Vice President
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 community to fight for better social support and medical systems.
Danuta Lis
Treasurer
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 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.
Shelly Redman
Interim Secretary
Canada
Shelly Redman is Chief Executive Officer of the Huntington Society of Canada (HSC), a national not for profit organization providing support, education, advocacy & awareness, and funding research.
Since joining HSC in 2020, she has led the expansion of the organization’s research funding programs and advocates for improved access to care for the HD community. Ms. Redman is co-Chair of the Governing Council of Neurologic Health Charities Canada, serves as Treasurer of the Board of Directors of Health Charities Coalition of Canada, and interim Secretary of the Board of Directors of the International Huntington Association.
Bea de Schepper
International Development Officer
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 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.
Arik Johnson
Member
United States of America
Dr. Arik Johnson is the Chief Mission Officer at HDSA, where he oversees all mission programs and services dedicated to supporting individuals and families affected by Huntington’s disease. A licensed clinical psychologist, Dr. Johnson has a wealth of experience working with Huntington’s patients and their families through his previous role at the HDSA Center of Excellence at UCLA.
At UCLA, he also provided clinical services in the Movement Disorder Program, assisting those with Parkinson’s disease, atypical Parkinsonian disorders, and other movement conditions. During his tenure, Dr. Johnson was actively involved with HDSA in various volunteer capacities, including serving on the HDSA Board of Trustees from 2010 to 2020 and chairing the board during the 2017-2018 term.
Dr. Johnson holds a Doctor of Psychology (PsyD) and a Master’s degree from the California School of Professional Psychology at Alliant International University. He earned his Bachelor of Science from the University of Minnesota.
Claudia Krinski
Member
Argentina
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.
Operational team
Tina Leggett
International Development Manager
Switzerland
Australia
My world was turned upside down in 2010, when I was told there was Huntington’s Disease in my family. Originally from Australia, I trained there as a nurse and experienced the complex challenges of HD long before I knew I was at-risk myself.
During a 20-year career in international business development for the medtech/pharma sector, I relocated to Switzerland and gained experience in clinical trial strategy and implementation in the EU and US.
I am now fully dedicated to supporting the global Huntington’s Disease community and doing whatever I can to help those affected. I am on the board of the Swiss Huntington Association, and I also coordinate a global Community Advisory Board (HD-CAB). HD-CAB is made up of a team of HD family members who give input to all those involved in the development and authorization of therapies for Huntington’s Disease. Advocates for HD-CAB infuse the patient and caregiver perspective into clinical trials and treatment access.
Daniela Carvalho
Communication Manager
Portugal
Daniela Carvalho joined the International Huntington Association (IHA) as a Communication Manager in 2021. She holds a bachelor’s degree in Communication Sciences from the University of Lisbon and has completed a course in Journalism and Audiovisual Communication at ETIC.
In her role at IHA, Daniela has played a key part in strengthening the association’s communication efforts. She built and maintains the IHA website, ensuring it remains up-to-date and user-friendly. Daniela is also responsible for creating all visual and promotional materials for conferences and events, managing IHA’s social media presence, and developing engaging content to raise awareness about Huntington’s Disease.
Miguel Caetano
Project Manager
Portugal
Miguel Caetano has for the past 2 and half years been working closely with the IHA as a Project Manager, dedicated to helping establish national HD associations globally in hopes of creating a worldwide network of patients, family members and caregivers. Miguel is also the Project Manager that liaises with the pharmaceutical industry, this approach puts patient advocacy groups and the national associations we represent first when dealing with pharma. Miguel has a Bachelor’s in Communication Studies and finishing a Master’s in International Relations.
Michaela Winkelmann
International Development
Germany
For more than 30 years Michaela has been familiar with the many challenges that HD families face, as her grandfather, father and an uncle have all passed away from HD. Her cousin was diagnosed with Juvenile HD as a teenager. Her brother committed suicide when he was 17 years old because he feared getting HD.
Michaela has been a member of the advisory board of the German HD association (Deutsche Huntington-Hilfe, DHH) since 2011 as a youth representative. She was on the board from 2014 and was Chair of DHH from 2017 to 2023. During this time, she placed a strong focus on awareness (e.g. she launched Light it Up 4 HD in Germany) and educational work, e.g. established new offers (online and print) for HD families in Germany. Strengthen the cooperation with the HD centers in Germany and active exchange with pharmaceutical companies were also important topics for her.
She has been translating HDBuzz articles into German since 2012. For many years, she coordinated the translations of the HDYO website into various languages. She is very well connected in the HD community both nationally and internationally. She is passionate about improving the lives of people with Huntington’s disease and their families all over the world.
Horst Winkelmann
International Development
Germany
In his professional life, Horst was an IT manager for over 30 years. His focus was on simplifying processes and making administrative work more effective. He worked abroad for several years as well.
Horst joined the German HD association (Deutsche Huntington-Hilfe, DHH) in 2018, as Data Protection Coordinator due to the existence of HD in his wife’s family.
Through his regular participation in national and international HD events, he is very well connected with HD family members, other HD organizations as well as HD researchers.
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