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+ | ====== Trials at NIH ====== | ||
+ | [[http:// | ||
- | ====== Celebrating Norouz ====== | + | [[https:// |
- | ===== with Max Amini at Nessah Synagogue - March 9th, 2016 ===== | + | The Natural History Study of patients |
- | This Norouz, we welcome you to celebrate the blessing | + | |
- | {{: | + | 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. |
- | **March 9, 2016** \\ | + | People eligible to participate in the studies may have travel expenses covered by the NIH, including those traveling form outside the US. Travel |
- | Nessah Educational | + | |
- | 142 S Rexford Dr, Beverly Hills, CA 90212\\ | + | |
- | **For tickets, please purchase online:** \\ | + | Visit their website! |
- | [[http://hibm.org/arm/ticketbooth|{{: | + | |
- | **For more information please contact:** \\ | ||
- | (818) 789-1044\\ | ||
- | 1-800-ARM-2000\\ | ||
+ | ====== Jefferson Award ====== | ||
+ | [[about_arm: | ||
+ | Dr. Babak Darvish, co-founder of ARM, has received the Jefferson Award. | ||
+ | {{ youtube> | ||
+ | LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. | ||
+ | The [[https:// | ||
- | ====== LA Marathon March 9, 2014 ====== | + | [[about_arm: |
- | + | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' | |
- | {{: | + | |
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- | 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). | + | |
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- | All the runners know one or more patients with HIBM and are running | + | |
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- | Donate and support HIBM team at: http://www.crowdrise.com/ | + | |
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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! | + | |
\\ | \\ | ||
- | {{ vimeo> | ||
- | [[http:// | + | ====== LA City Council Award ====== |
- | + | Council of the city of Los Angeles salutes | |
- | + | \\ \\ | |
- | ====== 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, | + | |
\\ | \\ | ||
- | Please click on the following link to access the survey; | + | {{ :about_arm: |
- | [[https:// | + | |
\\ | \\ | ||
- | 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. | + | |
- | + | ||
- | 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:// | + | |
\\ \\ | \\ \\ | ||
+ | {{ 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:// | + | |
\\ \\ | \\ \\ | ||
- | ====== | + | ====== |
+ | 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/ | + | |
- | + | ||
- | LOS ANGELES (KABC) -- Throughout the year ABC7 recognizes individuals making a difference in their communities. | + | |
- | + | ||
- | The [[http:// | + | |
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- | [[about_arm: | + | |
- | + | ||
- | To read more about the Jefferson Award or to read the heartfelt nomination letter written by Dr. Darvish' | + | |
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- | \\ \\ | + | |
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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. \\ | + | |
- | + | ||
- | Watch ABC7's News story [[http:// | + | |
- | + | ||
- | Read about more patients like Kam at: [[community: | + | |
- | + | ||
- | ====== 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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- | ====== 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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- | \\ | + |