November 19, 2024
October 2024 Meeting Notes
- Updates from KDA President:
- Represented the KDA at the 14 October meeting of the Late Onset Neuromuscular Disease Consortium (LONDC) in Savannah. LONDC includes 17 neuromuscular diseases, of which KD is one.
- Informed the Board of the sale of Hedley&Bennet aprons to benefit the KDA sponsored by Dan Jacobs, KDA member and finalist in the Top Chef Milwaukee competition held earlier this year.
- Introduced Donna Short, consultant and patient advocacy specialist, who graciously volunteered to sit in on the meeting and share some of her expertise with the Board.
- Financial Update:
- KDA Treasurer provided a financial update in preparation for the discussion of annual grants and fellowships and the resources available to cover them.
- Deliberated and decided to award three grants and one fellowship for 2024, for a total of $330,500. Of note is that two of the grants went to biotech start-up companies to develop potential therapies. See the KDA webpage for details.
- Discussed last-minute details relating to the KDA 2024 Conference.
- Due to lack of time, delayed follow-on discussion of the Research Partnership Maturity Model for Patient Organizations until the next meeting.
