EveryLife Foundation for Rare Diseases recently announced the 2020 RareVoice Abbey Award Finalists.
Indian American twin sisters Esha and Arya Cyril from Pleasanton, CA are among the twenty-four finalists selected, ranging in age from 15 to 78, hailing from nine different states, and representing more than 11 rare diseases.
Nominees for each category were submitted by the rare disease community. The awards will be presented during the RareVoice Awards show which honors advocates who give rare disease patients a voice on Capitol Hill and in state government, according to a press release by the foudnation.
According to the nominees’ bios, Esha and Arya are juniors and passionate rare disease youth advocates. A few years ago, they started volunteering at a free health advisory clinic at a local community center for patients with no health insurance. That inspired them and developed in them a passion for the cause.
They are also motivated by family experiences with liver-related diseases. Both the sisters advocate for JoinJade based at the Asian Liver Center at Stanford University for hepatitis and liver related diseases.
Esha is currently doing research on using AI to facilitate Alzheimer’s Disease diagnosis where she hopes to help both the research and AD community. While Arya is currently doing research on Autoimmune disease and involved in developing a low cost diagnostic kit for Lupus.
The twins feel that supporting the rare disease community and hearing their powerful narratives is a step forward. They also play racquetball for Team USA.
The award celebration, now in its ninth year, is hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation. The RareVoice Awards will be livestreamed on Dec. 10 from 7pm to 8pm ET at RareVoiceAwards.org. The recipient of the Abbey Award for each category will be announced during this broadcast.
Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards, and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).
“All of our 2020 RareVoice Award nominees are true champions of rare disease families. Each has gone above and beyond to continue their advocacy efforts despite the COVID pandemic,” as Julia Jenkins, EveryLife Foundation for Rare Diseases Executive Director was quoted saying in the press release.