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Youth Advocate Attends First Virtual Hill Day

Updated: Jul 1

Kassidy holding up her RDLA notepad, posing in her wheelchair with her service dog, Tibbs

Last week, I had the opportunity to kick off my rare advocacy journey and experience my first Capitol Hill Day during Rare Disease Legislative Advocates’ 2024 Youth and Teen Advocacy event.


I haven’t done a lot of public speaking in my 10 years, although I have talked to kids in classrooms about my service dog, Tibbs, and what it's like to have congenital muscular dystrophy. As with any new experience, I was very nervous leading up to my meetings. Right off the bat, the idea of talking about legislative issues intimidated me, but it didn’t hold me back.


Ahead of the event, to ensure I felt the most prepared and confident going into my meetings, I joined multiple training webinars to learn as much as I could about legislation affecting our community, and how I could best advocate for myself and other kids living with CMD like me. The day had finally arrived -- Tibbs helped get me ready and kept my energy up for my meetings, doing his best to give me extra love and support. I received encouragement from my family and friends along the way and practiced with note cards before the meetings, helping me feel more confident and remember what I wanted to say. Throughout the day, I met virtually with staff from three different legislators: one from my Representative’s office and one from each from my two Senators’ offices. They were all so kind, and listened to my story and my priorities, asking great questions to better understand how they could assist our community.

Screenshots of virtual meetings of Kassidy smiling during her meetings with her members of Congress

I shared my perspective about important pending legislation that directly impact youth living with a rare disease. My focus included:


  • Accelerating Kids' Access to Care Act (H.R. 4758 / S. 2372), which would simplify out-of-state Medicaid screening and enrollment processes for pediatric care providers so that children living with rare diseases can reach the most effective specialists, treatments, or procedures, whether around the corner or across state lines.

  • Creating Hope Reauthorization Act (H.R. 7384), which would reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program for six years, ensuring this vital incentive that has no cost to taxpayers can continue to spur innovation in rare diseases that disproportionately affect children.

  • Rare Disease Congressional Caucus, which helps bring public and Congressional awareness to the unique needs of the rare disease community and creates opportunities to address barriers to the development of and access to life-altering treatments.


Overall, I felt that my first advocacy event went really well, and I am looking forward to continuing my journey. Living with CMD comes with many challenges, and I am grateful to have had the opportunity to take part in this event, to share my life experiences and urge positive change for everyone impacted by CMD and other rare diseases. I feel incredibly empowered now, and hope that by continuing this work, I will encourage my peers to also raise their voices, big or small, to create an impact for all of us.

 

SAVE THE DATE: Registration for Rare Across America 2024 is open through July 12, 2024! No prior advocacy experience is necessary to meet with and share your story with legislative representatives, to educate them about issues important to our rare community. Events will take place August 5-16, and will be scheduled based on your availability. Training webinars are available. Learn more at: everylifefoundation.org/rare-advocates/rare-across-america/

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