Running for Rett, Lighting the Way

Michelle Mehrara will be lacing up her sneakers with purpose on Sunday when she runs the 2024 Disney Princess Half Marathon. As a member of Acadia’s Advocacy and Industry Relations team, her goal goes beyond simply crossing the finish line; she’ll be running all 13.1 miles to support Girl Power 2 Cure and the Rett syndrome community.

Girl Power 2 Cure stands at the forefront of the battle against Rett syndrome, dedicating its efforts to empowering and supporting affected families, raising awareness, and funding critical research. This noble cause resonates deeply with Michelle, especially after her young son, Rambo, was diagnosed with a rare disease last year. This personal connection to the rare disease community has motivated her to extend her support to others facing similar adversities.

“Just weeks after my son was diagnosed with a rare disease last October, I learned about the opportunity to run for Girl Power 2 Cure,” Michelle shares. “It struck a chord. I immediately said, ‘I want to do it.’

With my son and others with rare diseases in mind, I saw it as my chance to be part of something much bigger. It’s about contributing where I can, recognizing that not everyone has this opportunity.”

The Disney Princess Half Marathon represents more than an athletic challenge. It symbolizes a journey of courage, resilience, and advocacy, mirroring the qualities Michelle and her family have exhibited in the face of their own challenges. Her choice to support Girl Power 2 Cure, an organization dedicated to the fight against Rett syndrome, reflects her deep commitment to making a difference in the lives of those affected by rare diseases.

Like many in the rare disease communities, Michelle’s personal journey through her son Rambo’s diagnosis was filled with uncertainties and challenges. She offers advice to other parents in similar situations: “If you feel something is off with your child, trust your intuition,” she said. “Once you have a diagnosis, there is a community out there for support. Networking and connecting with others in similar situations are crucial.” Her experience underscores the importance of advocacy, community support, and the power of a parent’s instinct.

At Acadia, Michelle’s role in the Advocacy and Industry Relations team provides her with a platform to extend her advocacy beyond personal boundaries. Her professional endeavors complement her personal mission, highlighting the impact of personal experiences on professional roles and the transformative power of advocacy.

Michelle’s journey, marked by challenges, learning, and growth, is a vivid reminder that in the fight against rare diseases, every step counts, and every voice can make a difference. Her story is not just one of personal triumph but also a narrative of communal hope and the unyielding spirit of advocacy.

For more information on the Disney Princess Half Marathon, visit the Run Disney blog. To learn more about Girl Power 2 Cure and their mission to support families and fund research for Rett syndrome, visit their website.