A Blog from our CEO – Bev Heim-Myers
February 23, 2016
There is a buzz of excitement in the warm air of Palm Springs at the 11th CHDI HD Therapeutics Conference.
For me it is always exciting to start the conference by seeing Dr. Jeff Carroll and Dr. Ed Wild. Truly friends of HSC and both are looking forward to joining us in Halifax in November.
Be sure to follow summaries of the scientific presentations on HD Buzz.
The conference opened with a talk – Therapeutics for HD.
There is lots of exciting data in the field. We know that more chromosomes are modified by HD than Chromosome 4. It is good to identify more modifier genes as it will help identify more therapeutics.
It is clear that there is a huge appreciation for the HD Community of patients, caregivers,researchers, lay organizations and donors. We all work together to find solutions. Everyone is critical in this journey.
Enroll-HD continues to grow and is starting to reveal potential and make contributions. This global data base will be critical when treatments become available. Being able to quickly identify the best individuals for specific studies, will expedite the clinical trial process.
The opening Keynote address is always a highlight of the CHDI conference. This year Astri Arnesen and Svein Olaf Olsen, both from the European Huntington Association, shared their long journey with HD.
Astri grew up in an HD family in Norway. As one of 5 children she shared her story of living with a mother with HD, a father who left the family, and siblings who dealt with this devastating disease in their own unique way.
Astri and Svein met as young 20 somethings, the reality and threat of HD hung over them like a dark cloud
The story is not new. All HD families have their stories. HD is more than a disease, it impacts every part of a life, for generations.
Their honest, yet raw emotional sharing of their life with HD touched on many themes from never discussing HD in the family, not understanding why a mom was so unreasonable and unpredictable, the decision to have children and the struggle with whether or not to be tested for the mutation. The themes are common but their story unique.
In closing, Astri thanked the researchers for their commitment and encouraged them to keep going. I am not sure if she truly understood that she is their motivation and inspires them to achieve even more.