Sandra Darvish wrote -
HIBM, or GNE Myopathy, is an adult-onset muscle wasting disorder. It is hereditary. Starting in their late 20s, early 30s, patients slowly lose muscle strength, until they're no longer able to walk or use their arms and hands, or even hold up their head. It is extremely rare, and therefore there is not a lot of money or interest to do research and find a cure. Through grass-roots fundraising, we have been able to reach the point of clinical trials - treatments are actually being tested on patients. There is still more work to be done, and every little bit of funding helps, really! Watch the video, https://vimeo.com/67183189 or go to www.hibm.org for more information.
Thanks for your support!!!