What do you do for HD-CAB?
The 3 partner associations have a partnership agreement where we have decided to rotate on the responsibility as chair of the management board (with repr from the partners). As EHA has previous experience in Ad boards I have taken on the responsibility as chair for the first 2 years. The Management Team is responsible for the operations of HD-CAB.
My educational background is as teacher in special education. I also have further university studies in psychology, communication, innovation and management. I worked for many years as a teacher for children with disabilities and learning difficulties. Later on, I started as head of department for public services offering counselling and support to schools and kindergartens in relation to special educational issues. I ended my carrier within the educational system in 2016 when I took over as President and CEO of the European Huntington Association (EHA) and started to work full time here.
I grew up in an HD family as my mother had HD and developed symptoms during my late childhood and adolescence. My brother passed away with HD only 46 years old in 2015. My oldest sister is in a care home and dependent on help 24/7. She is now 64 years old and, in many ways, follow the same HD-path as our mother did over 20 years ago.
When my mother was diagnosed in the early 1980’ties we immediately got in touch with the Norwegian HD association (LHS). To me it was a lifechanging experience to meet other family members affected by HD. I have been part of the HD community ever since the first day we met with Sigrun Rosenlund, who was the chair of LHS at the time.
I was chair for LHS from 2004 to 2014 and during this time I learned the importance of international collaboration. In 2010 I was elected to the board of EHA. Before I took over as President of EHA in 2016, all my engagement in the associations was as volunteer. EHA has had great leaders in the past and is based on core values as solidarity, inclusion and collaboration. This is a tradition and path we want to continue and that is one of the main reasons we have been active in establishing the HD-CAB partnership.
EHA has been in favour of a global partnership for a long time. We formed the partnership with the International Huntington Association (IHA) and the Huntington Disease Youth Organisation (HDYO), because we regard them to have the same core values and many of the same objectives. Together we want HD-CAB to be a united global voice for the HD community and with a particular emphasis on the younger generations. We see a need and importance in advocating and contributing in the entire cycle of drug development – from idea to access to medicines for patients.
Svein Olaf Olsen
What do you do for HD-CAB?
I am a member of the Management Board. As the Presdient of IHA, I am very much involved in the partnership with HD-CAB.
Have been working in different HD-member association for 20 years. Education and ideology influence spec.ped. Cand. Mag. and the 70’ties “flower power” thesis– Love and Peace!
Met a wonderful woman, Astri, in 1983. Her mother was affected by Huntingtons and we lived, had two childrens, without knowing the status of my love, Astri. HD is one of five most important things in my life and it has had a huge impact on my decisions. In 2010 Astri was tested and the same year we married after 27 years sharing “everything”.
I have been a Board Member of EHA for 7 years and for the time being I am The President of the International Huntington Association.
What do you do for HD-CAB?
I am the representative for HDYO on the management team of HD-CAB, we are responsible for the operations and oversight of HD-CAB
My education was in pharmaceutical sciences and I obtained my PhD in Biochemistry. I worked at Unilever, a global consumer goods company for 5 years. I also joined as a laboratory scientist and then worked as a project manager. I gained experience in delivering successful projects while working alongside global cross-functional teams. I managed these projects from project conception through to product launch.
I have not worked in pharmaceutical consultancy for the past 3 years with a particular interest in patient burden and rare diseases real-world evidence manager. I collaborate with a diverse group of healthcare professionals from academia, charities, patient advocates, clinical specialisms and industry sponsors. I have been working in Huntington’s disease for the past 3 years
Although I am not personally affected by HD, I have been involved with the HD community for 2.5 years now and it’s been such a special experience. As part of my main day job I’ve have the pleasure to attend and learn from many HD events and conferences. I felt instantly welcomed and at home as a professional new to the community. I have made new friendships and have met many inspiring and dedicated people.
I have volunteered with young people in community groups and as a teaching assistant previously and I was looking to volunteer for a charity utilizing my business experience, scientific knowledge and passion for rare disease patient advocacy. HDYO was a perfect fit.
I have been chair of the HDYO board for the past 2 years
HDYO and I are thrilled to join HD-CAB and excited to be part of an amazing team with the aligned goal of a united global voice for HS. Ensuring the voice of young people is heard in research, clinical trial design and through to access is key to help us focus on and achieve future treatment options not just aimed at treating people experiencing symptoms but also pre symptomatic young people.