Meeting Highlights:
- KDA member Pete Sariano provided an excellent briefing on the efforts to date of the team working to establish KD Centers of Excellence (CoEs). The team has studied models of CoEs, defined the KDA’s objectives, and outlined incremental steps we can take, starting with developing a list of recommended physicians to treat KD patients.
- At the end of the meeting Board members voted to add Pete, who is currently a consultant to the healthcare industry, to the KDA Board of Directors based on the skills and energy he will bring to the position. Congratulations, Pete – we look forward to working with you!
- Received reports on several conferences and meetings held in October at which KDA representatives were in attendance:
- KDA President attended the annual NORD (National Organization for Rare Disorders) and LONDC (Late-onset Neuromuscular Disorders Consortium) meetings.
- KDA President and Secretary visited the office of and received a briefing from ReviR Therapeutics, which received a KDA grant last year.
- KDA Vice President represented the KDA Board in Toronto at the meeting of Canadian KDA members, who are interested in establishing a Canadian chapter of the KDA.
- Most of the meeting time was devoted to discussion of and voting on the grant and fellowship proposals submitted to the KDA for 2025. This year marked the highest quality and greatest number of proposals ever received. Working from the prioritized list based on recommendations from the KDA SRB and other experts, the Board decided to award all the recommended proposals which included seven grants and three fellowships for a total of $931,000 – an unprecedented amount of annual award funding by the KDA.
- Registration for the 2026 KDA conference is going well, with 112 people already registered for in-person attendance and 24 for virtual. The early bird deadline is extended till the end of November, so there is still time to get the discounted rate.
