Image Description: Someone in a wheelchair seen in a kitchen. They’re wearing a yellow sweater.

It wasn’t until I attended Muscular Dystrophy camp in my freshman year of high school- embracing my disability hasn’t been the easiest of journeys or something I accepted right away. It took me time to find the strength and the courage to understand my differences and love my body for what it was and what I could do. At camp, I could fully embrace my differences without having to fear that I was going to be judged or misrepresented.

Between 2015 and 2017, I became more involved with the Muscular Dystrophy Association (MDA). I volunteered for several events around the St. Louis area, such as Shamrocks, Muscle Walk, and the telethon, and talked to firefighters to gain support, donate to MDA, and share my story. Being able to share my story allowed me to embrace my disability and be more confident in my surroundings, knowing that people were being educated about the disability community in hopes of being better advocates and supporters. 

Having such a community as the MDA has allowed me to embrace and meet other people in the disabled community who are going through similar things and know that I am not alone. 

In 2017, I became an MDA Ambassador. I continue to spread awareness and educate others, go to different events in the area, and tell supporters and donors how to support the disabled community best. In addition, I am a member of our non-profit organization, the Flying Pigs Foundation, where we raise money for MDA and are one of the top fundraising teams in St. Louis for MDA. 

I recently got involved in several other organizations this past year due to my transition from being a college student to being a young adult with a disability living at home. I am involved in my county’s Independent Living Center, Young Adult Rare Representatives, and Disability EmpowHer Network. 

As you can see, there are many ways to get involved in our community. You just have to research and see what is available in your area. I wish I would have had these resources sooner in my transition journey. If you are interested, I will provide a few resources to start your advocacy journey. 

• Financial Resources:
  • ABLE Accounts
• Independent living: 
  • LifeCourse Nexus
• Professional Development: 
  • Disability Lead
  • Disability IN
• Advocacy 
  • National Disability Rights Network
  • Access Living
  • Disability EmpowHer Network
  • AAPD
  • EveryLife Foundation Rare Disease