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2021 DARE Annual Report

Global DARE Foundation has had another amazing year. Again in 2021 we established a set of measurable goals focused on improving treatment and care, advancing research, raising awareness, and collaborating. As you will see in our accomplishments, we have achieved everything we set out to do this year.

Shortly after the year started, we established a partnership with Kennedy Krieger Institute to deliver on our objective to test more foods to understand their fatty acid content. Only 150 foods had been tested in the past. Susan Kuranoff, DARE’s Vice President and Ann Moser of Kennedy Krieger deserve special recognition for their hard work in moving forward this project. A big win for our community!

We spent much of the year increasing the awareness of Refsum Disease around the world. This was done with the release of our easy-to-understand white boarding video in 5 languages, more strategic partnerships built by our Country Ambassadors, Google Ad campaigns, and our educational webinars.

Our Medical and Scientific Advisory Board has been very engaged with us this year discussing how we move forward treatment guidelines for Refsum, determining the translational research to pursue and made several grant submissions to advance our mouse model studies at Johns Hopkins. In 2022, we expect to begin some preliminary mouse model studies.

We launched the first annual DARE to Believe 5K fundraiser in June. It was a great success! We were fortunate to have two matching contributions that allowed us to raise just over $33K. A special thanks goes to my co-workers at TD Bank who helped us receive a $8K matching grant from TD Bank.

In October, we were excited to be awarded a one-time $50,000 general operating support award from the Chan Zuckerberg Initiative for the impressive and inspiring work we are doing. This will go a long way to helping us fulfill our mission in 2022.

We are very grateful to have such strong supporters and volunteers helping us achieve our mission. None of this would have been possible without all of you. We are positioned well for continued success in 2022!

Read the annual report at this link:

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