Meeting Highlights:
- Updates from KDA President:
- In a conversation with a neurologist in China, learned that: there is interest in creating a KD patient advocacy group like the KDA; there is a WeChat group for KD with approximately 5000 participants; one doctor in Beijing estimates that he sees one new KD patient nearly every week; and Chinese researchers are working on a CRISPR tool developed for ALS as a possible pathway for treating KD. Intention is to continue this connection with the Chinese KD community.
- More than 20 SBMA researchers, including seven students funded by the KDA, attended Gordon Conference on CAG expansion repeat diseases last month.
- KDA is one of the signatories on a letter from MDA’s “NMAC” (Neuro-Muscular Advocacy Coalition) opposing federal budget cuts to programs such as Medicaid, Medicare and the Affordable Care Act.
- KDA President visited Dr. William Kennedy who first identified KD as a disease and spoke with him at length about his discovery, his career as a neurologist, and his lifelong interest and accomplishments in sports,
- KDA 2026 Conference Update: There is now a preliminary draft agenda for the conference and a preliminary pricing plan. Once the latter is finalized we’ll be ready to open up registration.
- Grants and Fellowships: Having received a record number of applications for the combined grants and fellowships program, the Board discussed at length the evaluation and decision process in collaboration with KDA’s Scientific Review Board. Final decisions and awards are expected this Fall.
- Marketing and Outreach Update:
- The fundraising team completed the first segment of its donor outreach effort and is working on a summary report.
- The 100-Step Challenge fundraiser has launched and donations are starting to come in.
