It took Susie about 18 months to walk again.

By the time Susie Breuer was diagnosed with Adult Refsum Disease in her early 40s, she was facing profound challenges with her health and mobility. It took about 18 months of treatment and physiotherapy before she could walk again with a walking stick.

Susie’s experience makes the need for better options painfully clear.

Susie Breuer, Global DARE’s Australian ambassador.

“When you’ve got an ultra, ultra-rare disease, that is an incredibly lonely thing.” —Susie Breuer

Refsum disease can affect sight, hearing, sensation, balance and mobility. For people living with the disease, the need for progress is not abstract. It is part of everyday life.

You can help move that progress forward. And right now, your gift can go twice as far.

Your gift. Matched by our board.

Global DARE board members have committed $18,000 to match year-end gifts dollar for dollar through December 31, while matching funds remain.

Your $100 gift can provide $200 for this work. Your $250 gift can become $500.

Please give today and help reach our $50,000 year-end goal, including the board match.

A roadmap is not a treatment.

But it tells us what must happen next. Scientists came together with the Refsum community to prioritize research and shape a shared roadmap for the work ahead.

For a community living with an ultra-rare disease, that matters. It means bringing scientific expertise together around the questions that matter to patients—and identifying the work needed to pursue answers.

Now that shared direction needs support. Your gift will help Global DARE advance the collaboration, evidence and research capacity needed to turn those priorities into action.

The long-term ambition is a cure. The work ahead is to pursue better care and treatments—and build the knowledge and partnerships that can bring better options closer.

Research takes time. No campaign can promise a breakthrough. But your support can help move the work forward.

Why I’m asking you to help

I live with Refsum disease, too. I know that a research roadmap matters because of the people who need it—not because of the document itself.

People like Susie. People navigating changes in their vision, hearing and ability to move through daily life. Families wondering what the future will hold.

We need better options. And we need people willing to help us pursue them.

Will you make your year-end gift today?

The questions are clearer. The need is urgent. And you can help move the answers closer.

Thank you for standing with Susie and the Refsum community.

With gratitude,

Kristie DeMarco
Founder and President
Global DARE Foundation

P.S. Your gift can be matched dollar for dollar through December 31, while funds remain in the $18,000 board matching pool. Please give today and help turn shared research priorities into progress.

DARE to Discover: Funding the Global Refsum Research Roadmap

Help turn the research roadmap into progress. Board members will match your gift dollar for dollar, up to $18,000, through December 31 while matching funds remain.