05/21/2026
Meet another member of our board 🌟Through advocacy, education, and strategic partnership, they help drive our mission forward - building stronger systems and more connected communities.
We are proud to introduce one of our incredible board members, Sky Collins.
Sky Collins is an advocate for Oklahoma’s rare disease community, leading initiatives through Oklahoma Rare and service on local, state and national boards. She works to amplify patient and caregiver voices in state and federal policy discussions, advocating for equitable policies and greater access. She is passionate about fostering spaces that break down systemic barriers and is excited to support Unity Forward Oklahoma’s mission to strengthen communities across the state. Sky is a 2017 Partners in Policymaking graduate.
What motivates you to advocate or engage within the community?
I’m continually grounded by the families I’ve met, especially those navigating rare diseases, who are often moving through complex systems without being fully seen or heard. Their experiences stay with me and shape the work I do. I believe community has real power to shift that reality - to improve access, strengthen care, and expand opportunity in ways that feel more equitable and human. That belief keeps me focused on building connection and community.
What does “breaking barriers and building bridges” mean to you?
To me, it means intentionally building pathways where individuals, families, and communities can access opportunities, share experiences, and work together toward meaningful change.
Favorite advocacy highlight?
One of my most memorable advocacy moments came during Rare Disease Week on Capitol Hill, when a congressional health policy staffer told me that every time she saw a sunflower - the symbol for Malan Syndrome - she thought of my daughter. That simple connection stayed with me. It was a powerful reminder that advocacy is not just about policy change; it’s about bringing the human impact into in every conversation. Telling our stories matters because it helps policymakers and the staff who keep the process moving understand that behind every decision is a real person, a real family, and a real life affected.
