Rare Disease Legislative Advocates Youth & Teen Advocacy Day

Rare Disease Legislative Advocates Youth and Teen Advocacy Day took place on June, 18th 2024. I had the opportunity to speak about important acts that directly impact kids and youth with rare disease across the country. I felt it was a very great experience. During my meetings The Accelerating Kids’ Access to Care Act, as well as the Creating Hope Reauthorization Act were my focus.  Having a rare disease has many challenges. Sharing about my life experiences with the hope that it may help change and make things better for others with rare diseases across the country is empowering. I will say that I was very nervous.  The meetings all took place over one day and were done using Zoom meetings. I felt like I got better throughout the day.  I had prepared notecards and been preparing by practicing with my family for the meetings. They helped me to be confident and remember what I wanted to say.   I haven't done a lot of public speaking in my 10 years. I have talked to kids in classrooms about service dogs and about Congenital Muscular Dystrophy.  Talking about legislative issues was a little bit intimidating.  I was very nervous leading up to the meetings. I had gotten a few emails as well as my families encouragement and support making me feel better.   Tibbs helped me get ready for me day, and helped me keep my energy up for my meetings by assisting me. Tibbs did his best to give me some extra love and support that morning as well.  It was great getting to meet with the staff from three different offices. I met with legislative correspondent Eve Schoenberg from Illinois Senator Tammy Duckworth's office, legislative correspondent Robert Spivey from Illinois Senator Dick Durbin's office, and policy advisor Worth Loving from Representative Mary Miller's office  They all were so kind and listened to my story, my asks, and asked questions to better understand how they could assist me and kids like me. During all of my meetings I asked for pictures.  I have recently learned to edit and add graphics to pictures.  It is something I really enjoy doing.  I have included them for you to see. 

                         

I felt that my first legislative advocacy event day went great. I am very glad was able to take part in the day and hope it had an impact to help individuals with rare diseases.