Distinguished Alumni Award Winner Sarah Tompkins ('05)

This year, the Overlake community is proud to welcome Sarah Tompkins (’05) back to campus as this year’s Distinguished Alumni Award winner. Tompkins receives this award in honor of her ongoing efforts as a Rare Disease Advocate. She presented to the entire community during assemblies and will also be honored at a reception later this evening.

“Your voice is valid, and you can change lives,” shares Tompkins in reflecting on the biggest lesson she’s learned as an advocate. Tompkins, 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, Tompkins has not stopped vocalizing and amplifying her own story and the stories of so many others. “About the time you get tired of telling your story is the time that people start listening,” shares Tompkins, who has been telling her story since the early 2000s.  

Though she 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 her to be diagnosed. 

“I’m a zebra,” says Tompkins, 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,” she explains. 

Tompkins 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. She has also attends 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,” she says.  

During her presentation, Tompkins encouraged students to use their voices, whether they suffer from a rare  disease or not. She pointed out that when speaking to a legislator or policy maker it helps to not only hear the voices of patients and caregivers but also voices of friends who can punctuate the reality that when we are not all a valued member of the community, the whole group suffers. Students were also very curious about her advocacy and legislative work and asked several inquisitive questions about what Tompkins is doing and what her hopes are for the future. 

Reflecting upon her time at Overlake, Tompkins 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,” she shares. Serving on the Alumni Board has also given her 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.”