- Updates provided by KDA President:
- On May 1 KDA President and Secretary were at NIH for the planting 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. Dr. Fischbeck was in attendance along with Branch members and other colleagues with whom he had worked during his NIH career.
- KDA has reached out to NORD (National Organization for Rare Diseases), of which it is a long-time member, to seek closer cooperation and take greater advantage of the help and expertise it may offer.
- The Treasurer is embarking on an effort to set up financial files for Board access in SharePoint, thereby eliminating the need to send them as email attachments.
- KDA Conference update:
- Registration is going well, with numbers ahead of previous years’.
- The draft agenda received favorable comments and will soon be ready for publication.
- Another announcement will be going out before Memorial Day weekend.
- KDA Vice President reported that a draft of the KDA 2023 Annual report will be ready before the next meeting.
- Patient and General Support:
- We are up to date in organizing and responding to info@kda emails.
- We need to engage medical experts to help respond to medical questions that come in.
- The Men’s Support Group hopes to expand its reach.
- We may have found a leader for the Women’s/Caregivers’ Support Group.
- The Carrier Group is compiling a list of symptoms experienced by carriers.
- The Board reviewed and discussed the KDA Bylaws with a view to updating them.
- Began a discussion of ramping up our fundraising efforts, focusing on the importance of doing something now, particularly in view of the increased prevalence of the KD gene mutation and developments in research and clinical trials.
