In this season of giving, we’re reminded of the incredible power of this community - families, friends, and supporters like you who make hope possible for those living with PURA Syndrome.

Here’s some things we’ve been working on at the Global Foundation:

Research Proposals are under review - new PURA projects are on the way
Networking and Partnerships - strengthening collaborations to accelerate research and resources
Patient Registry - expanding and improving the patient registry so families are ready for natural history studies and future trials
Disease Concept Model - building the first detailed picture of life with PURA Syndrome to guide clinicians, researchers and regulators
Community resources - developing new tools, explanations and support materials for newly diagnosed families and other supports for our current families

This year, we’re inviting our PURA family to come together for something Rare & Mighty…the 2025 Giving Tuesday Challenge! Give $11 and share our story to help raise awareness and support for the PURA Syndrome community. And here’s the exciting news — thanks to a generous donor, every dollar you give will be matched up to $5,500! That means your $11 becomes $22 — doubling your impact for families and individuals with PURA Syndrome.

Our goal is simple and powerful: 500 people giving $11 = $5,500 raised by December 31 which will be matched dollar-for-dollar for a total of $11,000 to fuel awareness, research, and hope.

Here’s how you can take part:

Give $11 (or more!) today
Share our campaign post on social media to help us spread awareness
Invite friends and family to join you in giving

Your continued support has already made such a difference in the lives of families across the world. With your help again this Giving Tuesday, we can reach even more people, share more stories, and bring more visibility to this rare and mighty community.

Together, we can show the world the strength of the PURA community — one act of kindness, one $11 gift, one story at a time.

Thank you for being such an important part of this journey.

Rare & Mighty: 2025 Giving Tuesday & End of Year Challenge

Share our story to help raise awareness and support our PURA Syndrome Community!