Trials at NIH
Natural History and ManNAc trials of patients with GNE Myopathy (formerly Hereditary Inclusion Body Myopathy, HIBM) are conducted by NIH.
The Natural History Study of patients with GNE Myopathy collects genetic and medical information from people with GNE myopathy. Patients are followed over time to understand the symptoms and clinical course of GNE myopathy. This information is essential to prepare clinical treatment trials.
By participating in this study, you will help to improve our understanding of GNE Myopathy disease process, which is an important contribution towards a cure. These trials may lead to better therapies.
People eligible to participate in the studies may have travel expenses covered by the NIH, including those traveling form outside the US. Travel and lodging expenses may be paid for a companion if medically indicated.
Visit their website! GNE Myopathy
Jefferson Award
Dr. Babak Darvish, co-founder of ARM, has received the Jefferson Award. Dr. Babak Darvish's story, “Doctor determined to Cure Rare Disease”, was aired on Channel ABC7 (Los Angeles).
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.
LA City Council Award
Council of the city of Los Angeles salutes and celebrates Advancement of Research for Myopathies (A.R.M) for its dedication and commitment to all current and future patients who have lost muscle tissue, and empowering patients and communities worldwide with knowledge and support.
Dr. Darvish and Kam Redlawsk - ABC7 News
Dr. Babak Darvish, 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 cure-able. 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.
Read about more patients like Kam at: click here.
See ABC7's News story HERE
Research Gives Hope
The result of scientific study on a mouse model gives hope that N-Acetylmannosamine, a sugar-like molecule, may help HIBM patients. See the scientific article published in JCI. The study used a mouse model produced by HIBM Research Group (HRG), an ARM funded laboratory.
For more information see published findings
Who is ARM?
Watch our snapshot of who we are, how we began, where research is and how HIBM affects the daily lives of patients. Be A Part of The Cure, Today!