This is a forum for GNE Myopathy where I discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease. GNE Myopathy is also known as Hereditary Inclusion Body Myopathy (HIBM). I will invite others to share their stories, tips, and comments. I will discuss potential treatments, clinical trials, current research, and resources available for patients with GNE Myopathy.
tara
Wednesday, July 4, 2012
Dr. D. Darvish and Dr. B. Darvish Talks About Their Research and Experience with HIBM
This is discussion by two doctors who have HIBM. They have dedicated their lives and resources to finding a cure for HIBM. It's quite a touching, poignant and heartwarming story. (For those who are unable to access this link, please let me know).
http://www.laweekly.com/2012-07-05/news/HIBM-rare-diseases-bobby-darvish-daniel-darvish/4/
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1 comment:
Tara,
Nice to post this article about the Darvish's. Great work on the blog. Keep it up.
Ron
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