Member Details
Organization: Kennedy’s Disease Association
Title: President
About Me:
I was elected president of the KDA in 2021 and have been working ever since to expand awareness of Kennedy's disease (KD, also known as spinal and bulbar muscular atrophy - SBMA), support our patients and families, and raise money for research. While not a patient myself, Kennedy's disease is in our family and I'm passionate about supporting research to find effective treatments and a cure for this devastating disease. KDA includes associates from over 20 countries, and we are part of an informal alliance of patient advocacy groups in Australia, France, Italy, Japan, and the UK. The collaboration among these groups to share information mirrors the exceptional collaboration among researchers around the world working to understand the disease mechanisms and therapeutic pathways. KDA is a longtime member of NORD, and I look forward to working with and learning from other rare disease organizations.
Interests:
- board_management
- fundraising
- industry_engagement
- networking