Sarah Tompkins - Class of 2005

“Your voice is valid, and you can change lives,” shares Sarah Tompkins (’05) in reflecting on the biggest lesson she’s learned as a Rare Disease Advocate. Sarah, who was diagnosed with Ehlers-Danlos Syndrome in 2011, has dedicated her life to advocacy. From fighting for policy changes that create more equitable laws for those who live with rare diseases and/or disabilities to serving on the Board of Trustees for two nonprofits, Northwest Rare Disease Coalition and Connective Strength, Sarah has not stopped vocalizing and amplifying her own story and the stories of so many others (rare diseases impact 1 in every 8 individuals). “About the time you get tired of telling your story is the time that people start listening,” shares Sarah who has been telling her story since the early 2000s.  

Though Sarah started experiencing symptoms while still a student at Overlake, because rare diseases emerge differently in each patient as well as the lack of attention rare diseases such as Ehlers-Danlos Syndrome receive in medical training programs, it took 9 years for Sarah to be diagnosed. “I’m a zebra,” says Sarah, who proudly dons zebra print, the mascot of rare diseases. “In medical school, med students are taught that if you hear hoofbeats think horse, not zebra, and to follow the most likely path. Rare diseases are like a fingerprint or zebra, each one unique in how the patient experiences the disease,” explains Sarah.  

Sarah has dedicated her life to advocating, achieving markers of success including earning Rare Disease Day a spot on the annual calendar – February 28th – a law signed by former Governor Jay Inslee. Sarah has also attended Rare Disease Week in Washington DC each year. “It’s become the light of my year to connect with other advocates and understand the power of my own voice,” says Sarah of her annual trip to Rare Disease Week.  

Because of her work and accomplishments in the field of advocacy, Sarah has been selected as this year’s Distinguished Alumni Award recipient by the Overlake Alumni Board. In early November, Sarah presented to the students, faculty, and staff at the Distinguished Alumni Assemblies and was honored at an Alumni reception later that evening.  

Reflecting upon her time at Overlake, Sarah shares that her Overlake education has served her every single day. I learned how to be curious and confident when I was a student, and I learned that life can keep going despite the many daily challenges that come with living with a rare disease. “Overlake helped me adapt my schedule and school routine around my mobility issues and treatment,” Sarah shares. Serving on the Alumni Board has given her such a strong sense of belonging within the wider Overlake community. She’s gained a sense of self-confidence that has further validated her work and her voice in her mind. “I know I can enter any room and speak to anyone,” shares Sarah.