ARM's Quarterly (September) Newsletter is available for download and viewing. This celebratory 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.