July 18, 2025
February 2025 Meeting Notes
- Updates from KDA President:
- We’re hoping to see results soon from the AnnJi phase 2 clinical trial of AJ201 to treat KD.
- KDA President and Secretary made a visit to two KD collaborators in Paris in February:
- Nathan Beckouche and Xenia Proton de la Chapelle of AtmosR, the company that was awarded a KDA grant last year to develop a treatment for KD based on work done in the lab of Masahisa Katsuno in Nagoya, Japan. The visit to AtmosR’s lab coincided with the delivery of SBMA-modified cells from Katsuno’s lab.
- Catherine David-Marescot, the president of the French patient advocacy organization, the ARMK (L'Association pour le soutien à la Recherche et aux personnes concernées par la Maladie de Kennedy). Topics discussed included studying supplements and existing pharmaceuticals to alleviate symptoms.
- SBMA Japan has completed a promising clinical trial of a combination therapy of the drug leuprorelin and a wearable device called HAL, a robotic exoskeleton built by Cyberdyne.
- KDA Treasurer provided a financial update and announced that all 2024 KDA grants had been paid out.
- Planning for the February 2026 KDA patient and international research conference in Orlando is underway. As this will be a larger and longer conference than usual, KDA has engaged Site Solutions Worldwide to assist with the event.
- KDA Fundraising Director provided an update on the work of the Fundraising Committee which will focus on increasing KDA’s visibility and developing strong relationships and cultivating funding sources. Also announced that KDA’s most significant fundraising activites are coming up: Rare Disease Day Bay Area on 28 February, Dim Sum Give Some on 13 April, and the Texas Golf Scramble on May 3.
- Board voted on and approved a plan to use a “consent agenda” approach for future Board meetings to achieve greater efficiency.