- Social Innovation Fellowship
Award Year
The BeckerMD.org Peer Mentoring Program is a mentoring program for Becker Muscular Dystrophy (BMD) patients and their caregivers. BMD is a rare genetic disease that typically causes progressive, muscle weakness over several decades, which presents a unique set of emotional and physical transitions. The BMD Peer Mentoring Program emphasizes the value of a longer term, one-on-one mentoring relationship. It functions on the premise that newly diagnosed individuals could strongly benefit from hearing a more experienced mentor’s perspectives, which can sometimes be difficult to come by given the rarity of BMD. It aims to promote discussion, provide support, and to encourage more recently diagnosed patients to develop an empowered attitude towards their futures.
Personal Statement
I’ve had a longstanding commitment to teaching and mentoring. When I learned that a very close friend of mine had muscular dystrophy several years ago, I initially focused on learning as much as possible about the mechanism of the illness and its possible (but nonexistent) cures—as a science concentrator, this seemed like a natural way to cope. Eventually I found my way to support groups and online BMD communities, and was fortunate to start and sustain several conversations on various aspects of life with BMD with both BMDers and caregivers. I reflected upon the nature of communication in both the multi-participant online support groups and the one-on-one conversations I’d had, and felt that fostering continuous individualized conversations for others could provide a space to discuss some deeper, more complex issues that perhaps weren’t best suited for discussion on a public forum.
Because BMD is so rare, sometimes meeting— let alone forging a connection with— a fellow caregiver or BMDer is not easy. The BeckerMD mentoring program aims to make this a possibility. In the future, this mentoring model may be extended to individuals affected by other neuromuscular diseases.