Join Our 2024 Refsum Awareness Week!

Global DARE Foundation will be hosting our fourth Refsum Awareness Week from October 12 – October 19^th. Join us this October for a week filled with a variety of virtual events centered around raising awareness for early detection and diagnosis. We will have live webinars on mental health strategies for people living with chronic illnesses, cutting edge research impacting Refsum, as well as the latest clinical guidelines for Refsum. And as a special treat, we will have a webinar hosted by our president and vice president, Kristie DeMarco and Susan Kuranoff to commemorate Global DARE's 5-Year Anniversary and all the incredible progress we've made in the fight against Refsum!

Additionally, there will be a virtual 5k activity (run, walk, bike, swim, etc.) fundraiser taking place on your timeline throughout the week. This event will be for the entire Refsum Community including patients, caregivers, dietitians, researches, and passionate supporters.

5k Activity – a virtual 5K activity (run, walk, bike, swim, roll, etc.) that can take place anytime throughout the week either individually or as groups. Gather your friends for some fun and exercise! Tickets for the 5k are $29 – every registration makes a difference for Refsum!

Webinars – Four live webinars held over the course of the week with topics ranging from mental health strategies, new developments in Refsum research, the latest Clinical Guidelines, and our 5-Year Anniversary. Registration for all four webinars is $19.

Navigating Mental Health: Coping with Vision, Hearing, and Mobility Loss

🗓️ October 13th, 11-12:30pm Eastern
Gain insights into managing mental health challenges with Dr. Ann Wagner and Eric Ringham.

Adult Refsum Disease - Clinical Guidelines Overview 🗓️

- October 14th, 12-1pm Eastern
- Learn about the first-ever clinical guidelines with Dr. Radha Ramachandran.

Advances in Adult Refsum Disease Research

- 🗓️ October 15th, 12-1pm Eastern
- Discover exciting research updates from Dr. Wedad Fallatah and Dr. Rachel Huckfeldt.

Global DARE Foundation: Celebrating 5 Years of Progress

- 🗓️ October 19th, 9-10am Eastern
- Celebrate with us as Kristie DeMarco and Susan Kuranoff reflect on our journey and the future!

Combo Tickets - A discounted ticket for $39 for those participating in both the virtual 5K and the week’s webinars.

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.

2024 Refsum Awareness Week

Together We Can Defeat Refsum!

Team Members