Families living with HMERF-a rare, progressive form of muscular dystrophy that leads to severe weakness and respiratory failure-are waiting for treatments that do not yet exist. Your gift enables the Alliance Against HMERF to advance research, build scientific partnerships, and take the critical next steps needed to turn promising science into meaningful treatment for patients and families around the world. The GlobalGiving's tax-exempt ID number is 30-010826.
HMERF is a rare, progressive, adult-onset form of muscular dystrophy that disrupts careers, independence, family roles and future plans. It is also known by several different names, contributing to under diagnosis and an incomplete picture of how many people are affected. Because the patient population is very small, HMERF attracts little commercial research investment-leaving families with no approved treatment and only supportive care as the disease progresses.
Our priority is to advance the research needed to slow, stop and ultimately reverse the progressive muscle damage caused by HMERF. We fund promising science, build research partnerships and move discoveries towards treatment for a genetic disease that can affect families across generations. This work fills a gap few others will, driving research forward for a patient population too small to attract traditional investment.
The long-term impact is deeply personal: more time walking, working, parenting, travelling, breathing independently and living the lives HMERF threatens to take away. By advancing research towards a treatment, we are working to change the future for people living with HMERF today-and for the children and grandchildren who inherit it, so future families do not have to face this disease without a treatment. A treatment would change more than one life-it could change generations.
This project has provided additional documentation in a PDF file (projdoc.pdf).
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