Supporting families of Duchenne muscular dystrophy
A look into our Patient Education Guide
The JAR of Hope story began with one family receiving their son’s Duchenne muscular dystrophy (DMD) diagnosis and then starting their own fight against the disease. As it continues, our goal has evolved into raising money to fund research for therapies and clinical trials, and now, we want to help other families understand their child’s diagnosis. At the end of the day, JAR of Hope is determined to find a cure for all affected, but until then, we know how important it is to offer guidance through information and resources.
Several months ago, in partnership with Lanmark360, we began development of a patient education guide as a result of identifying an unmet need in the medical and pharmaceutical communities. Children were being diagnosed with this devastating terminal disease, but caregivers and families weren’t being given the information on where to go or what to do next.
Now complete, Understanding and managing Duchenne muscular dystrophy: A guide for families contains just fewer than 20 pages of essential information that will take families of newly diagnosed children through the DMD journey. It provides readers with an overview of what they can expect to learn, a definition of DMD, the five disease stages, symptoms, steps that physicians take to reach diagnosis, treatment and management, and additional support.
To disseminate this guide to as many patients and caregivers as possible via the medical offices of endocrinologists and other physicians, JAR of Hope is in constant communication with orphan drug manufacturers and pharmaceutical companies in the DMD space. Our objective is to partner with a sponsor who’s just as dedicated as we are to find a cure that will save the lives of children with DMD and give hope back to their loved ones.