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+ | ====== Trials at NIH ====== | ||
+ | [[http:// | ||
+ | [[https:// | ||
+ | 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:// | ||
+ | ====== Jefferson Award ====== | ||
+ | [[about_arm: | ||
+ | Dr. Babak Darvish, co-founder of ARM, has received the Jefferson Award. | ||
- | ====== LA Marathon March 9, 2014 ====== | + | {{ youtube> |
- | {{:irunlogo.jpg?290 |}} | + | LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. |
+ | The [[https:// | ||
- | 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: |
- | All the runners know one or more patients with HIBM and are running | + | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' |
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- | Donate and support HIBM team at: http:// | + | |
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- | ====== 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! | + | |
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- | {{ vimeo> | ||
- | [[http:// | + | ====== LA City Council Award ====== |
- | + | Council of the city of Los Angeles salutes | |
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- | ====== Middle Eastern Genetic Panel Survey ====== | + | {{ youtube> |
- | Synageva BioPharma is a clinical stage biopharmaceutical company dedicated to discovering, | + | |
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- | They have designed a short 10 minute survey to determine the awareness of people in the Persian/ | + | |
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- | We would like to ask your assistance in taking this survey, | + | |
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- | Please click on the following link to access the survey; | + | {{ :about_arm: |
- | [[https:// | + | |
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- | 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. | + | ====== Dr. Darvish and Kam Redlawsk - ABC7 News ====== |
+ | [[https:// | ||
+ | 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 | + | Kam Redlawsk, an HIBM patient, went through |
- | \\ | + | |
- | 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/ |
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- | [[http://hibmstudy.nhgri.nih.gov|{{: | + | |
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- | A Natural History Study of Patients with Hereditary Inclusion Body | + | |
- | Myopathy (HIBM) | + | |
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- | 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. | + | |
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- | 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. | + | |
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- | 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. | + | |
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- | 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:// | + | |
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+ | {{ youtube> | ||
+ | Read about more patients like Kam at: [[community: | ||
+ | ====== Research Gives Hope ====== | ||
+ | The result of scientific study on a mouse model gives hope that N-Acetylmannosamine, | ||
- | + | For more information see [[research:progress | |
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- | ====== ARM is now on Twitter!! ====== | + | |
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- | [[http:// | + | |
- | ARM is now on Twitter. Get connected today and tell all your friends! | + | |
- | [[http:// | + | |
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- | ====== | + | ====== |
+ | Watch our snapshot of who we are, how we began, where research is and how HIBM affects the daily lives of patients. | ||
- | [[http:// | + | {{ youtube> |
- | + | [[https://youtu.be/UDS752Y0xPs | |
- | **www.facebook.com/ | + | |
- | ** | + | |
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- | ARM is on Facebook! Want to help, but don't know how? " | + | |
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- | When you " | + | |
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- | ====== Middle-Eastern Genetic Panel ====== | + | |
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- | **Middle-Eastern Genetic Panel** - The people of Iran and Middle-East have higher risk for specific genetic disorders. We are currently offering | + | |
- | or visit: www.hibm.org/ | + | |
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- | ====== Dr.Babak Darvish, | + | |
- | [[about_arm: | + | |
- | July 22, 09 \\ | + | |
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- | Dr. Babak Darvish' | + | |
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- | Watch the Video Clip [[http://abclocal.go.com/kabc/ | + | |
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- | LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. | + | |
- | + | ||
- | The [[http:// | + | |
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- | [[about_arm: | + | |
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- | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' | + | |
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- | ====== Local MD gives hope for Rare Disease - Story on ABC7 News ====== | + | |
- | {{ kam_abc7.jpg|}} | + | |
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- | Dr. Babak Darvish, MD, | + | |
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- | 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. \\ | + | |
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- | Watch ABC7's News story [[http:// | + | |
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- | Read about more patients like Kam at: [[community: | + | |
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- | ====== Research Gives Hope Against Rare Muscle Disorder ====== | + | |
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- | The result of scientific study on a mouse model gives hope that N-Acetylmannosamine, | + | |
- | [[research: | + | |
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- | -------------- | + | |
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- | ====== Result of IVIg Clinical Trial ====== | + | |
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- | The result of the IVIg therapy, the first clinical therapeutic trial on HIBM, is now published. | + | |
- | ([[http:// | + | |
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