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April 2023 Meeting Notes
- Learned that KDA President Terry Thompson has been invited to be a member of the Steering Committee of the LONDC (Late Onset Neuromuscular Disease Consortium)
- Discussed the financial status of the KDA and possibilities for offsetting the decline in donations.
- Discussed items for the next KDA Newsletter, expected to be published near the end of the month.
- Discussed and approved funding for the second year of Dr. Shinichiro Yamada’s grant
- Discussed the feasibility of distributing Japan’s genomic knowledge survey to KDA members.
- Received a status report on the 2023 KD Global Conference in London, anticipating that registration and more detailed information will be available to KDA members by the end of April.
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March 2023 Meeting Notes
- Discussed and approved the new KDA website, with kudos to Ron Moffet who guided its development.
- Decided to add to the website a section on highlights from KDA Board meetings.
- Discussed and resolved issues relating to KDA grants and fellowships policy.
- Received a status report and discussed the Global KD Conference to be held in London this November.
- Decided that it would not be necessary to amend the KDA mission statement to accommodate funding DNA testing to diagnose KD.
- Discussed and approved the 2022 Annual Report, with thanks to Jameson Parker for his work on it.
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February 2023 Meeting Notes
- Approved funding for an SBMA Research Workshop to be held in September 2023, with the aim of attracting more scientists into research on Kennedy's Disease.
- Discussed progress in the development of the new KDA website.
- Discussed the KD Men's Support Group initiative.
- Agreed to review draft of the KDA 2022 Annual Report.
- Discussed and approved publication of a financial aid form for people who may need funding for a diagnostic blood test for KD.
- Discussed the 2023 "International Kennedy's Disease" conference to be held in London in November.
- Approved Kathy Thompson as interim KDA Secretary to replace Simon Hill who will remain on the Board.
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January 2023 Meeting Notes
- Welcomed Bob Borden as the co-editor (with Jameson Parker) of the KDA Newsletter.
- Approved Treasurer David Yelton's recommendation to file KDA regulatory documents for select states.
- Approved Ron Moffett's recommendation for a new website developer.
- Discussed initiative to offer KDA funding for people needing financial assistance for the diagnostic blood test for KD.
- Discussed content for the KDA Winter Newsletter.
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