Meeting Highlights:
- Updates from KDA President:
Following the 2026 KDA conference there has been more engagement with the Chinese SBMA community, including: a connection with Dr. Davide Pareyson to explore incorporating Chinese data into the international SBMA patient registry; and an introductory article in the latest International KD Newsletter from the founder of the China KDA, Mr. Hu Yu you, who attended the Orlando conference. Additionally, a Chinese researcher, Dr. Linhao Ruan, has been invited to participate in the Banbury workshop this fall.
The topic of this year’s KDA-sponsored Banbury workshop, scheduled for 4-6 October, is “Transcriptional and Epigenetic Dysregulation in SBMA.”
KDA is pursuing an ICD-10 code (referring to the standardized diagnostic codes used by healthcare providers to document conditions) that is specific to SBMA.
- KDA Corporate Secretary led a discussion of planning for the next KDA Conference. While the venue is still under discussion, the Board decided to hold the conference in early November 2027.
- KDA President led the discussion of a proposal to establish a CAB (Community Advisory Board) for the KDA. The Board generally agreed with the proposal and will await a formal draft to be circulated before the next meeting.
