EveryLife Foundation for Rare Diseases is proud to announce the winners of the RareVoice Awards hosted by Rare Disease Legislative Advocates (RDLA). The awards recognize and celebrate exceptional advocacy efforts in the rare disease community.
The awards were presented Wednesday at a gala event attended by notable figures from healthcare, advocacy, and patient communities. This year’s RareVoice Awards, hosted by a dynamic mother-daughter duo of rare disease advocates Cristina Casanova Might and Victoria Might, saw an extraordinary array of nominees who helped amplify the voice of the rare disease community in state and federal policy.
“The RareVoice Awards not only recognize individual achievements but also symbolize the collective strength and resilience of the rare disease community,” said Annie Kennedy, Chief of Policy, Advocacy and Patient Engagement at EveryLife Foundation. “Each winner’s story is a beacon of hope and a testament to what can be achieved through dedication and cooperation.”
During a pre-show Congressional Toast reception, Representative Brett Guthrie (KY-2) and Representative Paul Tonko (NY-20) were honored with a Congressional Leadership Award for their efforts in support of the rare disease community.
The winners of the 12th annual RareVoice Awards are:
Federal Advocacy – Congressional Staff
- Amanda Lincoln, Senate Committee on Health, Education, Labor and Pensions
- Lucas Lam, Office of Representative Eric Swalwell (CA-14)
Federal Advocacy by a Patient Advocate or Organization
- Mindy Henderson and Madison Lawson, Muscular Dystrophy Association
Federal Advocacy – Federal Agency Staff
- Philip “PJ” Brooks, National Center for Advancing Translational Science
- Kelly Buckland, U.S. Department of Transportation
State Advocacy by a State Legislator
- Representative Liz Reyer of Minnesota
State Advocacy by a Patient Advocate or Organization
- Annette Logan-Parker, Cures 4 The Kids Foundation
Advocacy by a Youth or Teenager
- Samantha Rose
Diversity Empowerment
- Carter Hemrion
Artist-to-Advocate
- Nell Choi
A total of 36 nominees were put forth by the rare disease community, and finalists were selected by members of the RareVoice Nominations Committee which includes:
- David Eckstein, Office of Clinical Research, NIH
- Wendy Erler, Alexion Pharmaceuticals
- Stephen Groft, EveryLife Foundation Board Member
- Carter Hemion, Young Adult Rare Representative
- Sarah-Lloyd Stevenson, Amazon
- Caitlin Van Sant, Mehlman Consulting
The event also highlighted EveryLife Foundation’s Rare Artist Program, which showcases the talents of individuals living with rare diseases. The program emphasizes the power of art as a medium for advocacy and awareness, providing a platform for artists to share their experiences and perspectives.
RareVoice Awardees receive a Rare Artist piece crafted by artists within the rare disease community. These art pieces are sourced from the awardees’ home states whenever possible to signify the sense of community among those touched by rare diseases. The combination of recognition, art, and local connection makes the RareVoice Awards a powerful celebration of advocacy.
The 2023 RareVoice Awards were sponsored by Sanofi and Takeda, and other generous partners.
For more information about the RareVoice Awards, including a complete list of nominees, please visit everylifefoundation.org/rarevoice-awards.
Media Contact: Margo Metzger
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