During the 2024 KDA Conference, Board members held a joint meeting with the KDA SRB (Scientific Review Board).
Attending from the SRB:
- Andy Lieberman
- Diane Merry
- Chris Grunseich
Attending from the KDA:
- Terry Thompson
- Jameson Parker
- John Lauber
- Kathy Thompson
- Simon Hill
- Steve Rittmaster
- Dale Traxler
- Ed Meyertholen
- Guest: Peter Rittmaster
This was a free-flowing session designed to stimulate ideas about the direction of the KDA, research into KD, and how we can work together to further our goals.
Discussion Highlights
- Discussed ways in which the KDA Board can help the research effort, including raising more money to bring more researchers into the field and holding more than one Banbury workshop per year.
- Shared ideas on our next conference and discussed the possibility of holding a 4-day conference modeled on London 2023, with 2 days of patient focus and 2 days of research; attending all 4 days would be optional.
- Posed a question about whether anyone in the SBMA research community is working on the possible reuse of drugs tried/used for other diseases, e.g., Huntingdon’s Disease, for SBMA.
- NCATS (National Center for Advancing Translational Sciences), part of NIH, is the organization in the Federal Government that would do the screening of drugs developed for other diseases.
- NCATS would need a screening plan for SBMA.
- KDA Board will follow up.
- Discussed and approved the idea of consolidating KDA’s grant application processes.
