For most ordinary high school teenagers, the weekday morning begins with an alarm, followed by hitting the snooze button and a quick drive to arrive in time for first period.

Gabby DiSalvo is no ordinary teenager. Her day begins at 5 am, giving her plenty of time to catch the hour and a half bus ride to her school in Brooklyn, New York, where she meets up with friends, takes honors classes and balances the challenges of high school. However, unlike her peers, Gabby lives each day overcoming the obstacles that often accompany a rare disease diagnosis. For those who know Gabby, they can tell you she isn’t one to back down from a challenge. It’s through these continual challenges that she finds motivation in advocating for the rare disease community.

After muscular delays prevented her from walking in her first couple years of life, Gabby received a diagnosis of myofibrillar myopathy, a rare genetic muscular disorder causing problems with the tone and contraction of skeletal muscles. After being told she would never walk, Gabby’s fighting spirit and determination led her to take her first steps at the age of three. However, her slightly unconventional walking method caused her to develop a curvature in her spine, leading to spinal fusion surgery at age ten. While the setback caused Gabby to become wheel-chair bound, her tenacious spirit and positive outlook on life have led her to advocate for the rare disease community and inspire others to see the world with a more open mind.


If someone were to tell me today we found a cure, some days I would take that cure. But on most days I wouldn’t because I remind myself I see the world from a different perspective.

Gabby DiSalvo

In 2018, Gabby realized she never talked about her diagnosis or her rare disease. She found herself searching for ways to share her story and bring awareness to the often overlooked group. With a little help from Google search, Gabby found Global Genes and decided to raise awareness for World Rare Disease Day. She pitched her awareness plans to the National Junior Honor Society and began gathering momentum with the local community surrounding the event date. Throughout the month of February, Gabby, her friends and family, schoolmates and staff proceeded to make more than 600 denim ribbons, hang posters, fundraise, and talk to others about her rare disease. Gabby shared her story with her school on World Rare Disease Day, informing her classmates and inspiring them to care about rare diseases.

“It’s through people like Gabby that we are reminded our work is never finished,” stated Angie Rowe, interim executive director, Global Genes. “More than 350 million people count on the advocacy efforts of the difference makers in our community and we’re grateful for the RARE Champions of Hope like Gabby DiSalvo who energize the rare disease community and remind us that we’re all in this together.”

Gabby’s incredible display of advocacy garnered her a 2018 RARE Champion of Hope Award where she was honored for her commitment to rare disease awareness and acknowledged as the community’s rising star.

Know someone who inspires your community? Nominate them for a 2019 RARE Champion of Hope Award.


Gabby continued her advocacy efforts this year by raising awareness in her Brooklyn community.