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Bike for Kam is a grassroots project about a group of friends coming together to complete a coastal bike tour from San Francisco to Santa Monica (Los Angeles) on April 25 to April 29, 2011. The purpose of their journey is to raise funds and awareness for their friend Kam, and for all those afflicted with HIBM (Hereditary Inclusion Body Myopathy). Through this project we hope to raise awareness of HIBM, so that we may soon find a cure for this rare condition.

As a grassroots project, all the work has been voluntarily created and expensed by the team above.

Please VISIT BIKEFORKAM.com TODAY! Donate and Pass it on to all your friends and family. Remember, no donation is too small.

For More Information on the project, read about Kam and the team or to Donate, visit:
http://www.bikeforkam.com

100% of Proceeds goes towards HIBM Medical Research.

A very special thanks to the Running for Cara team who raised a grand total of $18,143 in October of 2010! If you have always wanted to help, but don't know how, organizing a grassroots project in your community is a great way to get involved!!

Richard, Vince and Josh has joined crowdrise to help their dear friend, Cara, who is afflicted with HIBM. In an effort to raise awareness and funds towards the research for HIBM (Hereditary Inclusion Body Myopathy), they will be running for Cara in a marathon (40,000 steps) in Washington DC on October 31, 2010.

“When I first met Cara, at the coffee shop in our university, I didn’t ask her why she walked with a cane and a limp…My reaction was one of confusion and fear- terrified that things would progress, uncertain for my new friend’s future…It was terrifying to see a vibrant, young person affected by this terrible disorder in the prime of her life…I no longer take every step for granted. I’m running for Cara - a marathon, something I swore to never do again- to help raise money to fund the cure for HIBM. Perhaps my dear friend, and others with HIBM, can one day run one with us; afterwards we’ll laugh and complain about the “pain” in our feet together; knowing that we’re blessed to have it.”

Please read more and visit his fundraising page at:
http://www.crowdrise.com/CUREHIBM-running4cara

Read Cara's story at:
http://www.hibm.org/arm/community:cara_yar_khan:cara_yar_khan

ARM's EIN #: 95-4837946

If you've always wanted to help ARM, but just didn't know where to start–here is your chance! Start a grassroots fundraising page at crowdrise.com and help us get closer to the cure for this very rare and debilitating muscle condition.

ARM has just joined CROWDRISE.com, an online social fundraising, online giving and volunteer community. Crowdrise is about volunteering, raising money for Charity and whether you're running a marathon, volunteering, want to use your birthday to raise money, concert; you can create your own Fundraising Page on Crowdrise and choose 'Advancement of Research for Myopathies'; to raise money for from wherever you are and whatever fundraising idea you can dream up!

http://www.crowdrise.com/CUREHIBM
EIN #: 95-4837946

If you need help and have questions, please contact Kam at kredlawsk@hibm.org

ARM's Quarterly (September) Newsletter is available for download and viewing. This celebratory 10th Anniversary newsletter tells the story, where we came from and where we are today. Click icon below for download.

* 2010-09

To view past Newsletters please click here.

Middle-Eastern Genetic Panel - The people of Iran and Middle-East have higher risk for specific genetic disorders. We are currently offering a testing panel that will allow expecting parents to discover if their children are at risk. The tests can be done with a mouth swab, and there is no need for blood draw. Some or all of the tests may be covered by your insurance depending on your risks and your health insurance coverage. For ordering the tests, we can send the necessary information to your doctor. For more information, please contact HIBM Research Group laboratory at (818)789-1033 or visit: www.hibm.org/hrg

July 22, 09

Dr. Babak Darvish's story, “Doctor determined to Cure Rare Disease”, was aired Friday, July 24 Jefferson on Channel ABC7 (Los Angeles).

Watch the Video Clip HERE

LOS ANGELES (KABC) – Throughout the year ABC7 recognizes individuals making a difference in their communities.

The Jefferson Awards is an award organization co-founded by Jacqueline Kennedy-Onassis in 1972 to encourage and honor people for their contributions through community service. It is an organization based on a simple idea – the belief that one person can make a difference.

To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish's colleague, Crystal, please click here.

Dr. Babak Darvish, MD,Co-founder of ARM, and Kam Redlawsk were featured on ABC7's Health Living by reporter, Denise Dador on Thursday, August 20, 2009.

Kam Redlawsk, an HIBM patient, went through years of searching for a diagnosis for her unknown debilitating condition. By chance her visit to California would lead her to ARM and thus the Darvish Brothers, Co-founders of ARM, who had set out 10 years ago with the mission to cure HIBM. Using her Industrial Design background she created ARM's new look and patient campaign in hopes to gain more awareness towards a debilitating disease that has no cure, but is cureable. She continues as ARM's pro-bono Creative Director and patient advocate.

Join ARM, the Darvish Brothers, MD, Kam and all HIBM patients by giving them a voice.

Watch ABC7's News story HERE

Read about more patients like Kam at: click here.

Rare Disease Day is a campaign dedicated to increasing awareness with policy makers and the public of rare diseases and of their impact on patients’ lives. Rare Diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening.

The hope is that every year on February 28 Rare Disease day will increase awareness of rare diseases, the special challenges encountered by those affected, and the need for research to develop safe, effective treatments or cures. The rare disease patient is the orphan of most health systems often without diagnosis, without treatment and without research.

( For more info: rarediseaseday.org)

The result of scientific study on a mouse model gives hope that N-Acetylmannosamine, a sugar-like molecule, may help HIBM patients. See the news release and original scientific article published on June 1, 2007 issue of JCI. The study used a mouse model produced by HIBM Research Group (HRG), an ARM funded laboratory.
For more information and published findings

The result of the IVIg therapy, the first clinical therapeutic trial on HIBM, is now published. You may download the full text of the article at BMC Neurology. The study was made possible by patients referred from HIBM Research Group ( HRG), an ARM funded laboratory.