Sarah Tompkins on Clubhouse

Bio

Rare Diseases, Disability Rights, ADA, Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder Patient Expert Advocate & Volunteer ❤️🦓💕

Sarah Tompkins lives in Bellevue, WA with her Husband, Troy, & Jack Russell Terrier, Russell Wilson. 🐶

Diagnosed after 9 years of symptoms with Ehlers-Danlos Syndrome, Gastroparesis Syndrome, Chronic Pain, Dysautonomia Syndrome, Postural Orthostatic Tachycardia Syndrome, and more; patient advocacy has provided me growing confidence, self-esteem, resources and experience to be not only my own best and most effective advocate, but the best advocate for my Rare Disease, Chronic Illnesses, Chronic Pain, and Invisible and Visible Disabilities communities.

I helping to advocate for and establish Rare Disease Day in Olympia, Washington in 2015. Sarah evolved and continues her Rare Disease legislative advocacy with Rare Disease Legislative Advocates (RDLA) and their advocacy events and resources. Sarah serves on RDLA’s Advisory Committee and she is Advocacy Chair for Rare Disease Week 2021, and is ecstatic to join as Rare Disease Week 2022 Advocacy Chair this year. ❤️🦓❤️

Sarah is an a Washington State Pain Advocate, Disability Advocate, Rare Diseases, and EDS & HSD Patient Advocate, she wears many hats for her advocacy & volunteering roles.

Last year, Sarah competed in her first National Ms. Wheelchair USA 2021 disability pageant as Ms. Wheelchair Pacific Coast USA 2021, she was thrilled and honored to have won the Disabilities Redefined Social Media Award & Ms. Wheelchair USA 2021 2nd Runner Up. 💜👑💖🥳

This year, Sarah is competing for Ms. Wheelchair USA 2022 👑💕 as Ms. Wheelchair Washington USA, Sarah will promote & sharing the invaluable works of The Dane Foundation & Ms. Wheelchair USA for disabled communities. She’ll also share her passions for beauty 💄, self-care 🧖‍♀️, advocacy 🦽, volunteering ❤️ , and being yourself👩🏻‍🦽, through Sarah’s MWWUSA platform, “Practice Self-Care for your Healthcare,” she hopes to inspire everyone to improve be their own best advocate, selves, caregiver, and volunteer for themselves and for others.

Thank you for your time!