- Updates provided by KDA President:
- Chris Grunseich has been appointed to the Scientific Review Board. Chris is an SBMA researcher and lead clinician at the National Institutes of Health (NIH) in Bethesda, Maryland.
- Plans are underway for delivery and planting on May 1 of the KDA-sponsored commemorative tree at NIH to mark the retirement of Dr. Kenneth (Kurt) Fischbeck and the outstanding work done by the Neurogenetics Branch he led for 25 years.
- KDA received and approved the first proposal for a travel grant for a junior researcher.
- Several Board members participated in the survey conducted by the Late Onset Neuromuscular Disease Consortium, a group working under the American Neuromuscular Foundation.
- The Treasurer’s report highlighted the fact that we are ahead of budget expectations for the first quarter of the year, with higher than anticipated donations thanks to the Bay Area Rare Disease Day event, the Dim Sum Give Some fundraiser and early donations from the KD Golf Scramble. KDA’s tax returns for 2023 have been completed and circulated to Board members for review and comment. In addition, thanks to John Lauber’s initiative, KDA has a new LinkedIn presence, which all Board members were invited to share with their personal Li networks.
- The KDA 2024 conference in Orlando, Florida will be announced and registration opened within the next week. Information about the conference will be posted on the KDA website, and the announcement will be emailed to all KDA members. (Note: Registration for KDA 2024 opened on April 16.)
- The Vice President is completing the draft of KDA’s 2023 annual report that will be submitted for publication by the end of April.
- The President led a discussion of creating functional committees based on the activities already performed by Board members. This led to an expanded discussion of Board composition and a suggestion to review KDA’s bylaws to determine if any amendments are required.
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