RARE Global Advocacy Alliance Member Spotlight: Aimei Lund

Organization Name: Uplifting Athletes

Disease Affiliation: All Rare Diseases 

Organization Mission: Uplifting Athletes harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases.

What led you to the rare disease community?
I have always been someone that loves to give back to missions that are bigger than any one person. When my best friend was diagnosed with Guillain-Barre in college I realized I wanted to be a part of an organization that is doing work to give back to this community. The Rare Disease Community is full of passionate, resilient people, and I am honored to work alongside this community each day.

What do you think are the areas that are lacking in the community (specific to your org or in general)?
In the community, I believe that there is a need to educate medical students, young researchers, and doctors about the needs of the Rare Disease Community. Many researchers are retiring, but there is still research that is needed to find treatments and cures for all of the rare diseases that exist. I believe Uplifting Athletes is uniquely positioned to encourage these individuals to collaborate with the Rare Disease Community to ensure research continues to move forward. Our Young Investigator Draft provides research grants to young investigators studying any rare disease. I believe as we continue to grow, the opportunities that we are able to provide will support a continued interest in the Rare Disease Community for researchers.

What are your areas of expertise?
My background has been in development and peer-to-peer fundraising, but ultimately I am a relationship-builder. Relationships are the foundation to being able to work collaboratively to solve problems, create resources, and provide support. Building and maintaining relationships are extremely important to me and allows me to build our programs at Uplifting Athletes.

What is your hope for the future for rare diseases?
My hope for the future of the Rare Disease Community is that no one individual feels alone and can feel a part of this community. I hope that the community continues to work collaboratively to hear the needs of each patient community to find effective treatments or cures.

Learn more about the Global Advocacy Alliance. If your organization is already a member of the Global Advocacy Alliance and would like to be considered for a spotlight in a Global Genes monthly newsletter, please fill out the Global Advocacy Alliance: Member Spotlight Form.