Board Notes Archive

Meeting Highlights:  

1. 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.

2. 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 
3. 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.