August 29, 2023
August 2023 Meeting Notes
- We’ve had a great response to the Japanese Genetic Knowledge Survey from both KD men and carriers.
- A page will be built on the KDA website for posting and printing the one-page information documents on KD.
- The MDA has invited two SBMA clinicians, Chris Grunseich (NIH) and Tahseen Mozaffar (UC Irvine), to be part of their 2024 MedEd seminar.
- Continued the discussion of increased interaction with the MDA and coordination with them to have SBMA genetic testing offered at their clinics
- Decided to implement a fall fundraising campaign to address a recent increase in funding requests from the research community.
- Discussed a proposal to include periodic profiles of Board members in the KDA Newsletter and decided to broaden it to include researchers and KDA members.
- Decided to add an additional member to the KDA Board while continuing the discussion of the composition of the Board.