Hello friends and family. Thank you for visiting Rosie’s fundraiser page. At one month of age Rosie was diagnosed with Nemaline Myopathy caused by the ACTA1 gene. Instead of normal muscle fibers, Rosie’s muscles contain thread-like rods. She has hypotonia and muscle weakness that impact her breathing, head and neck control, and limb strength. From what Dan and I understand, neither of us are carriers, so this was unexpected and has changed our family in so many ways.

There is no cure and no medication that treats Nemaline Myopathy today. Our care focuses on therapies and close medical support. Rosie uses CPAP via RAM cannula at bedtime, receives her nutrition through a nasogastric tube, and wears a pulse oximeter when she sleeps. We work daily with pulmonary, gastrointestinal, and pediatric teams, along with physical, occupational, and speech therapists to give Rosie the best possible quality of life.

We are supporting A Foundation Building Strength because their mission is to find treatments for Nemaline Myopathy. Your support helps fund crucial research, advance understanding of ACTA1-related disease, and accelerate the development of therapies that could change the future for Rosie and other families facing this rare condition.

Please consider donating to help build strength for Rosie and children like her. Every gift brings us closer to treatments and hope. Thank you for standing with our family and for helping give Rosie a brighter, stronger future.