BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES
EVENT DATE: Mar 17, 2013
My name is Tara and I have been suffering from a disease known as Hereditary Inclusion Body Myopathy or HIBM. Over the past 10 plus years, I have gone from being a very active productive person to now, having to wear leg braces to walk, wheel chair, and other assitive devices to be able to go out of my home. I also depend on others for assistance.
It is a very humbling experience to see my physical abilities deteriorate. HIBM is a progressively weakening muscle disease and eventually renders those afflicted with it totally unable to physically take care of themselves. HIBM has affected me in my most productive years and continues.
The two young men representing me volunteered to run in the LA marathon to bring increased awareness and to help raise funds for ARM (Advancement for Research Myopathies) organisation. 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 kindly ask for your support and donations so we can get to human gene therapy trials for HIBM. One of my hopes is that someday I will be able to walk and even run on my sandy local beach, so I could feel what it's like to walk barefoot on sand again.
Note: Donations are tax deductible.