2025 Pacific Region Community Summit
Those Impacted by Inherited or Genetic MND and FTD are gathering in Melbourne in September 2025!
A team of individuals impacted by genetic MND in Australia working with Genetic ALS & FTD: End the Legacy and local organization Racing for MND i have planned a first ever in person summit by and for those impacted by inherited MND / FTD. Following two successful summits in North America , and with the excitement of the largest scientific meeting occuring in Melbourne this September , our team of advocates have planned a first summit for the pacific region with panels led by Genetic Counselors , Researchers and of course peers. Through both education, group sharing, and informal connections we expect those who gather will have the chance to leave the brief meeting with new-found energy.
Logistics
The Summit will be held at Melbourne's Library at the Dock, a gorgeous waterfront library with a large meeting space. The meeting will at start at 10:30 AM and conclude by 3:30pm on Saturday September 6th 2025. The meeting is closed with only those impacted by inherited or genetic MND or FTD invited to register.
Travel Support
We know it is difficult to gather at a specific place and time for those impacted by a rare disease. So we ensure our community summits offer travel support. Right now , for those who register by August 1st, a travel subsidy of up to 450 AUS will be available as needed via reimbursement for travel expenses provided after attending the summit.
Registration
Register with a simple $25 US ( about 40$ AUS) fee which covers meeting attendance and lunch as well as travel subsidy coverage when eligible. Register here: https://givebutter.com/XIo491