In 2004, my physicians in Michigan told me I had no hope. I was told I would never meet another Hereditary Inclusion Body Myopathy (HIBM) patient nor would I see research being done in my lifetime. My disease was too rare.
I moved to Los Angeles in 2006 for my design career and by chance read an article about two individuals , both of which were diagnosed with HIBM. Remarkably, not only were they brothers, they were medical doctors and research scientists as well. More than ten years ago they had started a nonprofit organization dedicated to raising awareness in both the public and scientific communities, naming their organization Advancement of Research for Myopothies (ARM). ARM has been the primary reason for scientific development of Hereditary Inclusion Body Myopathies.
Since ARM began, Dr. Daniel Darvish has pioneered amazing developments in treatment through their own nonprofit molecular laboratory. Current initiatives of ARM include real treatment hypotheses waiting to undergo human trials and possibly gene therapy for HIBM where hopefully, individuals with HIBM will once again be able to use their muscles. Of course, the limiting factor in moving forward with these initiatives is always lack of funds and awareness.
After meeting ARM more than 6 years ago, I started working with them as their creative director building their branding image and expanding outside their founded community. I’m also a strong patient advocate for HIBM and rare disease and blog – illustrating my way through the condition. Last year, I decided to start my own grassroots fundraising chapter with my friends, thus “Bike for Kam” was created. In an effort to raise funds and awareness, my friends rode their bikes 500 miles, from San Francisco to Santa Monica. We raised over $23,000 online, with 100% of the funds raised sent directly to HIBM for medical research.
Our goal this year? $40,000. The trip starts on May 12, 2012.
Hope to see you there! – Kam
For more information, please visit our Facebook page: Bike for Kam.