Meet Priscilla, a bright and inquisitive 9-year-old from Mason, Ohio, living with Nemaline Myopathy (NM). NM is a rare genetic condition affecting the muscles, leading to significant weakness throughout the body. Priscilla carries the NEB gene variant and is considered to be severely affected by the disease, impacting her mobility, breathing, speech, and swallowing.
A Passion for Knowledge and Compassion
“Priscilla truly enjoys going to school every day,” her mother, Laura, shares. Her favorite subjects include reading, math, and her gifted class. A significant part of Priscilla’s routine involves her faith. As Laura notes, “The very first thing she does after coming home from school is read the Bible and sing hymns. It’s become a meaningful and joyful part of her daily routine.”
Beyond her general love of learning, Priscilla harbors a specific passion: the human body. She eagerly reads books and watches educational videos on the topic, often expressing her heartfelt aspiration to become a doctor one day so she can help others. Her compassion extends to animals as well; she has a great love for dogs and often talks about her hope of having a service dog in the future.
Navigating Challenges with Strength and Resilience
Laura highlights Priscilla’s inherent adaptability: “One very special thing about Priscilla is her incredible strength and resilience. She is fully aware of the physical limitations she faces, but she never complains. Instead, she consistently looks for other ways to do the things she wants to do — with creativity, determination, and a positive attitude.” This spirit shapes how Priscilla engages with her hobbies, including singing, painting, playing chess, and power soccer, and how she connects with her friends. “Spending time with friends also brings her a lot of happiness. She enjoys going to parties and social gatherings where she can have fun and feel connected with others.”
The Importance of Community and Support
Laura finds deep value in the work of A Foundation Building Strength (AFBS). “What inspires me about the work that AFBS does is the commitment to raising awareness, supporting families, and advocating for children and adults with Nemaline Myopathy,” she explains. “AFBS creates a community where families feel seen, heard, and supported, and provides invaluable resources that empower both individuals and families to navigate the challenges they face.”
Supporting Priscilla and the Dream of a Treatment
Priscilla and her family are participating in the AFBS NM Awareness Share-A-Thon driven by a profound hope for the future. As Laura explains, “If a successful treatment for Nemaline Myopathy were found, it would mean the world to us. It would be truly life-changing — not only for my child, but for all the families who face the daily challenges of this condition. It would mean fewer medical risks, fewer physical limitations, and more freedom for my child to explore her full potential.”
This hope fuels their participation in the Share-A-Thon, a simple way to raise awareness and funds for research: supporters pledge a small amount for every share of designated NM content on social media. Priscilla’s personal fundraising goal is $500, a step towards a future where her dreams, like becoming a doctor, might become a tangible reality. As Laura states, the discovery of treatments “would also bring real, tangible hope — that her dreams, like becoming a doctor one day, are not just beautiful ideas, but truly possible goals.”
You can support Priscilla’s fundraising efforts and contribute to this vital hope by making a pledge here! Your contribution can help make a real difference in supporting the NM community and the search for treatments.
Join Priscilla and her family in raising awareness and funds for critical NM research! You can create your own fundraising page and encourage your network to participate by making a pledge and sharing.
And remember to share A Foundation Building Strength’s special NM Awareness content on Facebook and Instagram from May 26th to May 31st. Every share helps amplify the message and contributes to the collective impact of the Share-A-Thon. As Laura states, “This fundraiser is not just about money—it’s about giving hope, building connection, and showing those with NM that they are seen, valued, and never alone.”