Tuesday, November 04, 2008
Helping my friend Kam spread the word.
Kam needs your help to slow down the progression of her incurable disease...
A progressive and debilitating muscle disease (HIBM, Hereditary Inclusion Body Myopathy) caused by a gene defect began 9 years ago and everyday it progresses... It can lead to complete disability within 10-15 years (some to the same effect as c-spinal cord injury), though every patient can progress differently. Though HIBM is rare it affects people in all corners of the world.. After 8 years of living alone with this disease I met ARM (Advancement of Research Myopathies) in Los Angeles, CA. ARM, a non-profit organization, is the leading supporter in research towards a cure, and as their Creative Director She work on all their PR/Design needs.
If you want to know more about her story, here are a couple articles that were recently written.
The Dollar Campaign
The concept: Each person donates a dollar and passes the web page/link to their entire contact list via email and so on. All "dollars" go directly to getting patients to trial. With the Internet and social age I am confident we can spread the news and with One million people involved it can be achieved.
The projected project launch date is less than 1 month.
Human Clinical trials could possibly start as early as Summer of 2009.
ManNAc is believed to help stop or at the very least slow down the progression of HIBM. ManNAc has gone through the required research phases with FDA/NIH and is ready for human testing. ARM is seeking multiple avenues of research and ManNAC is one of these. ManNAc is ready to go and all that is required is 1 million dollars. If we can achieve these funds quickly, patients, including Kam, could start trials by 2009.