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Sarah Schwegel's journey from SMA diagnosis to inspiring advocate

Diagnosed with spinal muscular atrophy (SMA) from birth, her life was predicted to be short-lived, but Schwegel had other plans.

ST. LOUIS — In a world where adversity could have written her fate, Sarah Schwegel, a woman with unwavering determination and an inspiring spirit, has emerged as a true trailblazer. 

Diagnosed with spinal muscular atrophy (SMA) from birth, her life was predicted to be short-lived, but Schwegel had other plans.

From her early days spent in Children's Hospital, Schwegel's journey took a transformative turn every summer at the Muscular Dystrophy Association camp. There, she discovered a community that understood her struggles, offering respite from the constant vigilance her disability demanded. 

"When you are at MDA camp and you are surrounded by people who understand what you're going through... it's relaxing and you can let go and you feel free because you don't have to just be on guard and aware of how your disability makes you just slightly different," Schwegel said, reflecting on the times.

Her tenacity caught the attention of the nation when, in 2001, Jerry Lewis asked Schwegel to be the Goodwill ambassador for the Muscular Dystrophy Association. This marked a turning point for Schwegel, who realized the impact her voice could have in advocating for people with and without disabilities, striving for equal access and treatment. 

"It has really given me the opportunity to figure out who I am and learn how to be a public presence and advocate for people with and without disabilities to make sure that everyone gets equal access and treatment," she said.

Embracing the power of education, Schwegel earned both a Bachelor's Degree from Maryville University and a Masters from St. Louis University. Now, she's set to pursue her long-cherished dream of a doctorate in occupational therapy, furthering her mission to empower those with disabilities.

While Schwegel's achievements have been monumental, her recent breakthrough comes with the introduction of a new drug called Evrysdi. Thanks to this groundbreaking medication, she has gained newfound independence, rekindling her passion for art and pursuing activities she once thought impossible.

"I can move my arms so much more. I'm able to do art again. I can bake, I can set up my own meals now a little bit. Um, it's really incredible just to have like 5% more independence," she said.

Having just celebrated her 30th birthday, Schwegel stands as living proof that determination can defy the odds. Her story serves as an inspiration for everyone facing adversity, proving that through unwavering will and community support, dreams can be achieved despite daunting challenges.

Her organization, Festability, creates an atmosphere of celebration, support, and inclusivity for the disabled community, akin to a Pride event. 

She envisions a world where technology and strong communities combine to provide equal opportunities for all, stating, "We can use technology and build communities that are welcoming and offer everyone what they need to thrive and survive."

As Schwegel continues to make a difference, let her story be a reminder that every obstacle can be transformed into stepping stones, and every journey of resilience shapes a world of inclusion.

Together, we can join Sarah Schwegel in building a society where every individual, regardless of ability, thrives and embraces their true potential.

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