2020 Key Accomplishments 

Global DARE Foundation had an amazing first year because of the support of the Refsum Community.  Below are the 2020 key accomplishments that were achieved against our mission.  Read our 2020 Annual report for more details.

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2021 Refsum Advocacy plan

The Global DARE Foundation Board has established a clear set of objectives that are aligned to the foundation’s mission

Research & Care

  • Complete Phytanic Acid food project
     

  • Bring the Refsum Mouse model to Johns Hopkins and start the work towards the Gene Therapy Pilot Study
     

  • Conduct a research study on expanding the Omega Oxidation pathway
     

  • Publish Refsum treatment guidelines 
     

  • Investigate avenues for increasing accessibility for regular phytanic acid testing in various countries

Raising Awareness

  • Mature website and social media sites
     

  • Publish the Refsum whiteboarding video and get at least 2000 views
     

  • Leverage Google's Ad grant program to increase awareness and membership in the Refsum community 
     

  • Leverage the Country Ambassador program and MSAB to raise awareness with the public and clinicians 
     

  • Increase engagement to 100 patients with 75% enrolled in the registry.

Collaboration

  • Grow and mature the DARE Board
     

  • Leverage our Country Ambassador program and MSAB to create more partnerships with umbrella organizations 
     

  • Conduct more Refsum webinars in 2021 to educate Patients, Clinicians Researchers, and Supporters
     

  • Partner with organizations to obtain grants to help fund our Gene Therapy Pilot Study
     

  • Run two main fundraisers in 2021 with the goal of raising $40,000