Sandra Darvish wrote -
All the runners on this page know one or more patients with this orphan disease, and are running to support their friends or loved ones! Research is moving forward, and clinical trials are going on, soon no one will have to suffer from this debilitating disease, thanks to all the volunteers and fundraisers that helped raise funds for research on HIBM!
"My husband has this rare muscle wasting disorder that nobody has heard of unless you know someone who is affected, called HIBM. With his brother, who suffers from the same (yes, it's hereditary), he started a non-profit, ARM (Advancement of Research for Myopathies), to raise funds for research. In 10 years they have done an amazing job in finding treatments for this disease, and now they have moved research forward to clinical trials with two possible treatments. Patients are testing treatments for this disease! The next step will be gene therapy, and eventually stem cell therapy to bring back lost muscle.... I will run my first marathon to raise funds for HIBM research!" - Sandra Darvish