INTERVIEW: Stephanie Stavros & Get Loud CF
Stephanie was born with Cystic Fibrosis, a genetic disease that primarily leads to irreparable damage of the lungs. In spite of the considerable challenges, Stephanie continued her successful career as a designer all while being a devoted wife and loving mother. Unfortunately, CF started to have a greater impact on her life, forcing her to leave her career so that she could focus on her health. Through much introspection and painful self-acceptance, Stephanie made the courageous decision to begin sharing her story, reaching thousands through her platform and has made profoundly impactful changes on the lives of others living with CF. After a battle with an unrelenting pneumonia in 2019, Stephanie learned of a new "miracle medicine" that became available in the US. Unfortunately, this drug is not available in Canada, but this did not deter Stephanie. Stephanie was interviewed by local and national news stations; she reached out to her local members of government and even wrote to each executive of the pharmaceutical company. All that effort paid off when she learned that she was granted Compassionate Care by the manufacturer in January 2020, literally saving her life. Through unwavering faith and tireless effort, Stephanie was able to make her dreams a reality.
After this personal victory, Stephanie continued her advocacy work to help other CF patients fight for their right to breathe. Together with 3 CF patients that were fighting for their lives and the parent of a CF patient, Stephanie co-founded the volunteer advocacy group called CF Get Loud. The team’s mission is to elevate patients' stories; empowering them to use their voices and educate families on the barriers that are blocking the accessibility of innovative medicine. Today, the movement has over 4300 members and is growing. Together, they continue to fight to save the lives of 4400 Canadians.
Connect with Stephanie
Support the show (https://www.patron.com/findyourrare)