ADVANCEMENT OF RESEARCH FOR MYOPATHIES

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Patti Engel; Engage Health
Patti Engel; … SAYS:
All the best to you as you w…
All the best to you as you work to fight this disease!
3 years ago
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Bob Blum
Bob Blum SAYS:
In Honor of the Bike for Kam…
In Honor of the Bike for Kam Event
4 years ago
see more  
ADVANCEMENT OF RESEARCH FOR MYOPATH...
CROWDRISE : Jun 27, 2010
EIN: 95-4837946
BASED: Encino, CA, United States

CHARITY WEBSITE: www.hibm.org

ADVANCEMENT OF RESEARCH FOR ...

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This page

Our Mission

Support our mission by creating your own fundraiser.

Hmmm, a non-profit started by two brothers who 10 years ago found out that they have a debilitating and progressive condition, so they set up shop to try and cure their own disease for themselves and others in the world? Hmmm, sounds inspiring. Please read on.

So what was it those doctors had?

They realized they had Hereditary Inclusion Body Myopathy (HIBM), heterogenous group of rare/orphan genetic neuromuscular disorders. Unlike Muscular Dystrophy, which is skeletal muscle weakness, HIBM is characterized by muscle weakness developing in young adults, causing progressive and severely DEBILITATING muscle wasting that can lead a patient to quadriplegic state within 10 - 20 years. WOW!!

HIBM is also categorized as an Orphan Disease... RARE, and not the type of rare that people will pay big bucks for; like gems and rubies, but the type of rare that is not perceived as profitable by pharmaceutical industry, therefore not researched or studied. According to US criteria, an orphan disease is one that affects fewer than 200,000 people. And so, here we are. All rare and stuff with no one to help. Double WOW!

In an effort to advance research, and thus a cure for HIBM, those same two brothers, Dr. Daniel Darvish and Dr. Babak Darvish, founded ARM (Advancement of Research for Myopathies) and molecular lab, HRG (HIBM Research group) in an effort to advance research and a cure. Since, ARM has been paving hope towards a cure with the undeniable realization that treatment and/or CURE is possible within our lifetime. It is a very serious mission.

BUT WE NEED HELP. we can't do it alone. You might be asking, how can I help? Well, start your own fundraising page right here! Every dollar helps and every dollar brings hope to muscles that are slowly dying every day. Do a race, bake sale, rock concert, art show, biking, skydiving...anything you can dream up either big or small, everything helps.

To the left are some pictures of patients. In the pictures they look fine and all healthy, though they are super cool people, we assure you it is a daily struggle as they watch their own bodies become dependent on first; a cane, then leg braces, then a wheelchair and then, for some, confined to a bed. Please join us today.

www.hibm.org
Contact Kam if you are looking to help, but just don't know what to do.
email: kimkam.design@gmail.com

EIN: 95-4837946 • www.hibm.org

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