Board Meeting Notes

Meeting Highlights:  

1. KDA President:  

• Announced the passing of Dr. William R. Kennedy, who first described the symptoms of Kennedy’s Disease and identified it as an inherited condition.  
• Also announced that KDA would be joining ResearchMatch, a nonprofit funded by NIH that helps connect people interested in research studies with researchers from top medical centers across the country.

2. KDA Conference updates:

• Based on registration numbers, the upcoming conference will be KDA’s biggest ever, with in-person attendance already close to 160.    
• The specific schedule of patient-related talks is essentially in final form and will soon be published on the website.    
• On-site volunteers are still needed to help with tasks like registration, mic running, and silent auction set-up.  

3. Financial update highlighted the strong performance of fundraising activities in December and 2025 overall but noted the significant decrease in KDA’s finances after the award of almost a million dollars in grants and fellowships in 2025.  
4. Board discussed marketing and outreach updates, including results of a donor survey and plans for marketing KDA merchandise, and received an overview of plans for fundraising guidance at the KDA 2026 Conference.      
5. Research and Clinician Outreach updates:

• The first quarterly newsletter for neurologists will be sent later this month.
• The website will be updated with a clinician-focused section.
• The Centers of Excellence program for improving KD patient care is in development and being coordinated with experts in the field.

6. Board members were given guidance on preparing for the strategy/visioning workshop to be held on January 22.