Episode 7: Reflecting on Rare Disease Week ft. Alyssa Ronco & Jessica Wilfong

Overview



In Episode 7 of Roadmap to Rare, host Eric Finn sits down with two fellow OCNDS parents, Alyssa Ronco and Jessica Wilfong, to talk about their experience at Rare Disease Week in Washington, DC. The three-day event, run by the EveryLife Foundation for Rare Diseases (now officially known as the RARE Foundation), brings families from across the rare disease community together to share their stories and to meet with lawmakers about policies affecting rare disease families. Alyssa and Jessica share their families’ roads to an OCNDS diagnosis, their experience advocating on Capitol Hill, and the impact of meeting other rare disease families in person. They also reflect on the power of showing up in numbers and how advocacy efforts—big or small—can create change. 


Key takeaways:


  • Alyssa and Jessica’s different roads to an OCNDS diagnosis for their daughters
  • Why using your voice and lived experience matters for advocacy
  • The four legislative “asks” that rare disease families brought to lawmakers this year
  • What the meetings on Capitol Hill were like and how the experiences differed by state
  • The power of showing up in numbers and reflecting on meeting other OCNDS families
  • Advice for parents considering participating in advocacy


Episode highlights:


1:00: Alyssa and Jessica’s families' journeys to an OCNDS diagnosis

5:29: Deciding to get involved in advocacy on Capitol Hill and stepping outside your comfort zone

8:46: Learning to tell your story 

11:53: This year's four legislative "asks" for lawmakers

12:39: What the meetings with lawmakers were really like

15:28: Being "the voice for the voiceless"

22:57: Memorable moments

27:12: The camaraderie of being together in person

33:36: Advice for parents: find your courage and start small

39:52: Resources for learning to tell your story and attending Rare Disease Week


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