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.

 

Steamboat Classic

 Last year I ran along with my dad in a running chair.  He pushed me in it for 4 miles in the Steamboat Classic race.  I don't remember every detail, but I do remember...at every corner there were people cheering and encouraging us to go on. Due to safety with the chair and the large crowd we got to start 5 minutes early.  I remember being cold from the wind on my face. I remember talking to my dad about my brother, and hoping he did not catch up with us and pass us.   I asked my dad what his favorite part was from last year's race, he said "leading off the race together, and sharing the experience with me".  My favorite part was being out of my power chair and doing the race experience with my dad. We were able to come in first in the women's wheelchair race category.  It was unforgettable.  I can never forget how fun it was.  

  

I had big plans ever since that race to do it again this year. Unfortunately due to my health I was unable to participate in the same way this year. There are many fun ways to enjoy the Steamboat Classic race including cheering on the competitors, the after party, and the Riverfront Market right by it on the very same day. Tibbs and I cheered on my dad, brother, sister, and many family and community members.  It was fun to spot them in the crowd of runners both at the start line and the finish line.  We were also able to enjoy music by the stage at the after party. I got to chat with some of my family and friends.  They had neat new drinks and snacks set up for the runners. 

 

I love the Riverfront Market.  They have so many vendors with homemade items, treat, artwork, and produce.  I am so glad it is located by the race because it is such a fun way to extend the morning for more fun.  It is very dog friendly.  Almost everywhere you look people have their pets.  Tibbs is such a good boy, and helps me shop and find great things.  We especially like to check out the dog treat booths, and handmade items they are Tibbs and I's favorite booths.  Tibbs is a pretty popular guy.  He tends to get recognized often, allowing us to meet lots of new people.  It is a very early morning to fit in all this fun, so we are always ready to head home and rest up.