Get Ready for Refsum Summer FEST 2025!

Join the Global DARE Foundation from June 14–21 for a week full of fun, learning, inspiration, and a unique opportunity to make a difference for those living with Refsum disease — all online and in person! Here’s what’s coming your way:

5K Activity (June 14th – June 21st) – a virtual 5K activity (run, walk, bike, swim, roll, etc.) that can take place anytime throughout the week either individually or as groups.

New Webinars - 3 new webinars providing key updates and education on Refsum Disease

Kickoff Webinar with Kristie DeMarco & Susan Kuranoff
Science & Planning Update with Dianne Mitchell
Fireside Chat with Kristie DeMarco & Sharon Burstin

Inspirational Refsum Stories from our amazing community

Do-It-Yourself (DIY) Fundraising - Consider starting your own personal fundraiser—no matter how small. It could be anything you enjoy: a walk in the park, afternoon tea, birthday fundraiser, baking day with friends... the possibilities are endless! Every event helps raise awareness and support for the Refsum community. Just create your own fundraising page and get started. If you need help, reach out to us at info@globaldare.org.

Giveaways for Donors & Fundraisers

Below are the giveaways you will earn if you either raise or donated at the levels below. All giveaways are focused on continuing to raise awareness for Refsum Disease.

🌟 Research Trailblazer Level ($1,000+)
Receive your choice of a Summer Fest swag item (limited edition)!
🌼 Nutrition Champion Level ($500)
Get a FREE Summer Fest Mug to show your support in style.
🌍 Engagement Champion Level ($300)
Enjoy a 20% discount code for all Summer Fest Swag.
💪 Awareness Builder Level ($200)
Receive a 10% discount code for Summer Fest Swag.

We have created special festival merchandise. Access the Summer Fest Store to purchase event t-shirts, zip-up hoodies, notebooks and mugs. Part of the proceeds will be provided to Global DARE Foundation.

Example of DIY Past Fundraiser:

Running for a Reason - Michael’s Oxford Half Marathon for Refsum Disease

At just 23 years old, Michael took on the Oxford Half Marathon to raise awareness and funds for Refsum Disease—a rare condition that affects both his father and uncle. Motivated by his family's strength and his own experience living with ulcerative colitis, Michael wanted to make a difference.

He chose Oxford, the city where his family’s journey with Refsum first began, as the perfect setting for this personal and powerful fundraiser. Through every mile, Michael carried a message of hope and determination—supporting Global DARE’s mission to drive research and improve lives. Learn more about his inspiring story.

Global DARE Foundation's Mission

Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. DARE stands for Defeat Adult Refsum Everywhere. We DARE to believe there is a cure for Adult Refsum Disease.

Adult Refsum disease is a genetic disorder that impacts the metabolism of phytanic acid which is found in food. The disease significantly impact quality of life of patients by causing vision loss, hearing loss, loss of smell, mobility issues and more. People with Refsum Disease must also go on a very strict diet to slow progression of current symptoms and avoid life threatening symptoms. A better therapy is needed!

Please help support this important initiative. Any amount will make a difference. Please contact us by email (info@globaldarefoundation.org) if you have any questions.

Watch this short video to learn more about Refsum Disease and the work of Global DARE Foundation.

Summer Fest 2025

By Global DARE Foundation

Summer Fest 2025

Summer Vibes with a Purpose: Defeating Refsum Together

Team Members