Why I became a teenage rare disease advocate
My name is Aubrey, I am a senior in high school, and I am a rare disease advocate.
Anyone can be an advocate, but we all have different reasons why we feel called to help rare families and the treatments they are fighting for – this is my why…
The world of rare disease is not new to me – not because I have a rare disease, or even a rare sibling, but because my dad is a gene therapist. I have watched him work on developing treatments for children with rare diseases my whole life, and the world of rare research and family foundations has always been a part of our family life.
Inspired by a young advocate
When I was 9 years old, I met a girl named Hannah Sames. Hannah is the inspiration for Hannah’s Hope for GAN, a family foundation that was fighting to build the first gene therapy for a disease called GAN.
Hannah was right around my age, but facing more challenges in her life than I had ever imagined. Hannah was losing the ability to walk, and her disease would take her life if her family wasn’t successful in building a treatment. At the time, I was in dance, cheerleading, and Girl Scouts, but Hannah and I still had a lot in common. Despite our different lives, she was just like me – a little girl who wanted to experience all of the fun around her, hopeful for a bright future.
Couldn't we all be the change rare disease needs?
I knew that it cost a lot of money for the families of the foundation to get treatment for their kids, that they needed to raise it all because no one else would. I really wanted to help. I set up a table out front of my home to tell everyone that day about Hannah. As people walked by, I asked for their spare change, and I shouted out why they should help us build a treatment for her.
My school jumped on board and let me do a change for change drive in every classroom. It was the coolest thing, my friends and I made a video about the change drive and it was shown during the school news. Even then I knew that rare kids were my family. Hannah set my rare disease advocacy in motion.
Her mom Lori worked relentlessly with her community and researchers like my dad, and she did make it happen. Hannah DID get treated! Last year she graduated from high school. Hannah is still changing the world her way, and looking toward a bright future.
Rare disease advocates today mean hope for tomorrow
Fast forward a few years and our family moved to Texas for my dad’s work. We met so many more rare kids and parents, and my extended “rare-family” continued to grow with each new rare disease and amazing rare researcher we met. This is how I met Kasey and Gina from The Rare Village Foundation. I got to know them and their boys really well, and I care about them and all of families that they are working to help in the fight to change the outcome for rare disease. I helped them with their TikTok videos for their first Zebra Race for Rare, an annual event celebrating Rare Disease Day on February 28th – a super fun day to show our stripes!
Today I am still a cheerleader (hopefully for Alabama next year – wish me luck!) and I am still a Girl Scout. When it was time for me to choose a project for my Gold Award last year (the Gold Award is the final project of the Girl Scout journey, and it is an opportunity to make a lasting impact on our community!), I chose rare disease advocacy.
I wanted to share the stories and the families and the impact of rare disease in our community, and to find a way to both engage and inspire my peers and other kids to become rare disease advocates – to show that they care about rare and there a lots of reasons why this work matters. I chose to share facts about rare life, and stories about rare families on TikTok and Instagram, and I hope that other young people see them and will be a little more kind, a little more supportive, and maybe become rare advocates themselves for the kids in their communities. The rare disease world is full of amazing people, and I am very grateful for every single member of my rare family.
Follow Aubrey’s journey through rare advocacy @aubreys.gold.award on TikTok and Instagram or click the links below!