Maria Eleni Kaloidis is a 22-year-old in her final year at Post University. Like most women her age, she enjoys spending time with her family and friends while “drinking way too much coffee,” she adds. Despite showing symptoms the first few weeks of life, Maria was not diagnosed with spinal muscular atrophy (SMA) Type 1 until she was 9 months old.

Contrary to the stereotype people who use wheelchairs often face, SMA does not affect a person’s ability to think and learn. In fact, many adults affected by SMA are even more intellectually driven like Maria. “Learning was a major outlet for me to connect with my peers and to excel. I always possessed a strong love of learning because it allowed me to travel beyond the physical limitations of my disability,” she said. Maria is majoring in Biology/Human Services and plans to pursue a career in genetic counseling.

Shortly after Maria’s diagnosis, her family was introduced to Cure SMA. In 2011, she attended the annual SMA picnic in Niantic, Conn., near where she lived. “I had a wonderful time and enjoyed meeting others with SMA for the first time. I am still friends with many of the people who I met at that first event,” Maria recalls. “I feel there is nothing more valuable than being part of a community that understands your life and challenges without explanation.”

Now, as Chair of the Advocacy Committee for Cure SMA’s Connecticut Chapter, Maria has the opportunity to advocate for the SMA community on important issues, such as fighting for newborn screenings for SMA.  “I feel privileged to have been involved in this movement and other advocacy work for Cure SMA,” she shared. “Being a part of the SMA community is an emblem of strength in a shared fight against this disease.”

Maria also believes there’s power in numbers. She emphasizes the recent accomplishments for SMA, including the introduction of two FDA-approved treatments, thanks to the advocacy and fundraising efforts of the SMA community. “Through this journey, I have developed a passion for advocacy work and hope that I can someday be a powerful voice for the SMA community and individuals living with rare diseases,” Maria concludes.

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