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-  
  
 +====== Trials at NIH ======
  
 +[[http://hibmstudy.nhgri.nih.gov|{{:nih_logo.gif?100 |}}]]
  
-====== Celebrating Norouz ======+[[https://www.genome.gov/Current-NHGRI-Clinical-Studies/GNE-Myopathy |Natural History]] and [[https://clinicaltrials.gov/ct2/show/NCT04231266 |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! [[https://www.genome.gov/Current-NHGRI-Clinical-Studies/GNE-Myopathy | GNE Myopathy ]]
  
  
 +====== Jefferson Award ======
 +[[about_arm:press_room |{{  image_abc7.png|}}]]
 +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).
  
-====== LA Marathon March 9, 2014 ======+{{ youtube>flZMBqypZPU }}
  
  
-{{:irunlogo.jpg?290 |}}+LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. 
  
 +The [[https://abc13.com/archive/6932384/ | 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.
  
-Support HIBM by donating to 'I Run for HIBM' 2014 and/or become a team member fundraiser for the LA Marathon (March 9, 2014) and Boston Marathon (April 21, 2014).+[[about_arm:press_room|{{  jefferson.png|}}]]
  
-All the runners know one or more patients with HIBM and are running to support their friends or loved ones! Research is moving forward and with your support, soon no one will have to suffer from this debilitating disease, thanks to all the volunteers and fundraisers that helped raise funds for research on HIBM! +To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish's colleague, Crystal, [[about_arm:press_room |please click here.]]
- +
- +
-Donate and support HIBM team at: http://www.crowdrise.com/runforhibm2014 +
- +
-====== 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!+
  
 \\ \\
-{{ vimeo>67183189 }} 
  
-[[http://vimeo.com/67183189 | ARM (Advancement of Research for Myopathies) - Vimeo Video]] from [[http://vimeo.com/user18610337 | ARM]].+====== 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. 
- +\\ \\ 
-====== Middle Eastern Genetic Panel Survey ====== +{{ youtube>2gKN9OF5zNU }}
-Synageva BioPharma is a clinical stage biopharmaceutical company dedicated to discovering, developing and delivering medicines for patients with certain rare disease and unmet medical needs. Their lead program is an investigational therapy for Lysosomal Acid Lipase (LAL) Deficiency, which has two presentations-- an early onset form in infants (also known as Wolman disease) and a late onset form in children and adults (also known as Cholestryl Ester Storage Disease or CESD). The early onset form occurs more often in those of Persian or Persian Jewish descent. \\ +
- +
-They have designed a short 10 minute survey to determine the awareness of people in the Persian/Persian Jewish community of the increased risk of LAL Deficiency, HIBM, and other genetic conditions. \\ +
-  +
-We would like to ask your assistance in taking this survey, and in sharing the survey link with your friends and relatives who are of Persian or Persian Jewish descent.  They will be collecting survey responses for approximately one month, and donations will be made to LAL Solace, the patient organization devoted to LAL Deficiency, and ARM, the patient organization devoted to Hereditary Inclusion Body Myopathy (HIBM) in recognition of survey responses received.\\+
 \\ \\
-Please click on the following link to access the survey;  Survey Regarding Genetic Issues in Persian Jewish Community. \\ +{{ :about_arm:2016-10-28-lacitycouncilaward_20161029_110143.jpg?200 | }}
-[[https://www.engagehealth.com/TakeSurvey.aspx?SurveyID=96MI77]]\\+
 \\ \\
-Thank you in advance for your assistance in participating in and sharing this survey!\\ 
  
-====== HIBM Sialic Acid Phase II Trial Recruitment ====== 
  
-**Ultragenyx Pharmaceutical** has announced that recruitment has begun for a Phase II Trial study for HIBM patients.  Recruiting will soon begin at 3 locations (St. Louis, Los Angeles and New York) in the United States.  +====== Dr. Darvish and Kam Redlawsk - ABC7 News ====== 
 +[[https://www.youtube.com/watch?v=Vo0Mvwv3LI4 |{{  kam_abc7.jpg|}}]] 
 +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.
  
-To be eligible, patients must be between 18 and 65 years of age, must have a documented diagnosis of GNE myopathy (HIBM), must be able to walk 20 meters independently (may use orthotics and assistive devices) and able to comply with all study procedures including fine needle muscle biopsies of the upper and lower extremities at Baseline at 24 and 48 weeks. \\  +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.
-\\  +
-Click [[SIALIC TRIALS]] for more info. \\+
  
-\\ \\+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. \\
  
-====== HIBM Natural History Trial at NIH ====== +See ABC7's News story [[https://abc7news.com/archive/6975494/ |HERE]]
- +
-[[http://hibmstudy.nhgri.nih.gov|{{:nih_logo.gif?100 |}}]] +
- +
-A Natural History Study of Patients with Hereditary Inclusion Body +
-Myopathy (HIBM) +
- +
-We are currently screening and recruiting patients for the “Natural History Study +
-of Patients with Hereditary Inclusion Body Myopathy (HIBM)” at the NIH. The +
-Natural History study is an initiative to collect appropriate data that is essential +
-in preparation for treatment trials. The goal of this research study is to better +
-understand the signs, symptoms, and clinical course of HIBM and to develop +
-better tests to measure the progression of the disease. +
- +
-By participating in this study, you will help to improve our understanding of HIBM, +
-which is an important contribution to families and individuals affected by this +
-condition. This study will provide information that will help shape subsequent +
-investigations of potential treatments for HIBM. +
- +
-Our timeline includes the initiation of the Natural History study for HIBM in +
-September 2011 and the Clinical trial of ManNAc in HIBM no sooner than June +
-2012. +
- +
-People eligible to participate in these studies will have travel expenses covered +
-by the NIH, including those traveling form outside the US. Also, travel and +
-lodging expenses may be paid for a companion, if medically indicated. +
- +
-Visit their website! http://hibmstudy.nhgri.nih.gov +
 \\ \\ \\ \\
 +{{ youtube>96j8s5TiTk4 }}
  
 +Read about more patients like Kam at: [[community:personal stories| click 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 [[http://www.jci.org/117/6/1585?content_type=full| 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 [[research:progress |  published findings]] 
- +
- +
- +
- +
-====== ARM is now on Twitter!! ====== +
- +
-[[http://twitter.com/hibmarm|{{:twitter.png?100 |}}]]  +
-ARM is now on Twitter. Get connected today and tell all your friends!  +
-[[http://twitter.com/hibmarm]] +
 \\ \\ \\ \\
  
  
-====== Find us on Facebook and "Like" us Today! ======+====== 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! \\ \\
  
-[[http://www.facebook.com/curehibm|{{:facebook_logo.jpg?300|}}]] +{{ youtube>UDS752Y0xPs }}   
- +[[https://youtu.be/UDS752Y0xPs | View at YouTube]]
-**www.facebook.com/curehibm +
-** +
- +
-ARM is on Facebook! Want to help, but don't know how?  "Like" us on Facebook and don't forget to ask all your friends to like us, too! It's as easy as sending personal requests to your Facebook friends and encouraging them to become a fan of ARM. \\ +
- +
-When you "LIKE" us you are helping to spread awareness.  The more fans, the more people will know about this rare condition; HIBM, and thus the more opportunities to continue treatment development.  We need your friendship and your voice! +
-\\ \\ +
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-====== Middle-Eastern Genetic Panel ====== +
- +
-**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 +
-\\ \\ +
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-====== Dr.Babak Darvish,co-founder of ARM, an awardee of the Jefferson Award ====== +
-[[about_arm:press_room|{{  image_abc7.png|}}]] +
-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 [[http://abclocal.go.com/kabc/story?section=resources/lifestyle_community/community&id=6932384|HERE]] +
- +
-LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities.  +
- +
-The [[http://abclocal.go.com/kabc/channel?section=resources/lifestyle_community/community&id=6704272| 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. +
- +
-[[about_arm:press_room|{{  jefferson.png|}}]] +
- +
- To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish's colleague, Crystal, [[about_arm:press_room |please click here.]] +
- +
-\\ \\ +
- +
- +
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- +
- +
- +
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- +
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- +
-====== Local MD gives hope for Rare Disease - Story on ABC7 News ====== +
-{{  kam_abc7.jpg|}} +
- +
-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 [[http://abclocal.go.com/kabc/story?section=news/health&id=6975494|HERE]] \\ +
- +
-Read about more patients like Kam at: [[community:personal stories| click here.]] +
- +
-====== Research Gives Hope Against Rare Muscle Disorder ====== +
- +
-The result of scientific study on a mouse model gives hope that N-Acetylmannosamine, a sugar-like molecule, may help HIBM patients. See the [[http://www.nih.gov/news/pr/jun2007/nhgri-01.htm| news release]] and [[http://www.jci.org/117/6/1585?content_type=full| 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.\\ +
-[[research:progress| For more information and published findings]] \\ +
-\\ +
--------------- +
- +
-====== Result of IVIg Clinical Trial ====== +
- +
-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 [[http://www.biomedcentral.com/1471-2377/7/3| BMC Neurology]]. The study was made possible by patients referred from HIBM Research Group +
-([[http://www.hibm.org/hrg/| HRG]]), an ARM funded laboratory. +
- +
-\\+