Benjamin’s story

benjamin2Following seven weeks of preterm labor, Benjamin was born at 37 weeks on May 2, 2002. I felt that something was wrong since he never latched on while nursing, did not seem to suck or swallow, and did not seem to have appropriate reflexes. I was reassured that he was just a “sleepy baby,” and had passed all his examinations. One day later, while still in the hospital he suffered a cardiac arrest in my arms. Continue reading Benjamin’s story


Cure CMD Research News

Jun 16, 2009: Debio 025 for collagen VI: Ullrich CMD and Bethlem myopathy

This article adds to existing studies evaluating debio 025 as a potential therapeutic drug to treat UCMD and BM. To read more about debio 025, go to research news archives.
Click here to read more

Jun 16, 2009: PTC therapeutics awarded 1.6 million from FDA

PTC therapeutics the pharmaceutical maker of Ataluren (PTC124) was recently awarded 1.6 million dollars from the FDA to support ongoing trials of Ataluren (PTC 124) in Duchenne muscular dystrophy.  Ataluren works by targeting a specific type of nonsense mutation or stop codon.  For more on PTC 124 to to research news archives.
To read more click here

Jun 7, 2009: TREAT-NMD newsletter No.56

CMD Standard of Care effort launched.  We are recruiting experts in 8 categories to contribute to drafting a CMD Standard of Care document to give doctors, families and affected individuals guidance in optimizing medical care.

Newsletter…

Jun 1, 2009: Cure CMD announces Award Recipients

Cure CMD announces 5 award recipients for the Post Doctoral and Clinician in Training Competition.  The award recipients will receive financial support for traveling to the July CMD Therapeutic Target conference at Emory University. These awards were made possible through an NIH conference grant.  To read about the award recipients and their current scientific area of interest, click here.

Apr 24, 2009: TREAT-NMD Newsletter No. 53

Read about progress made during Cure CMD’s meeting with TREAT-NMD and international CMD expert neurologists
Newsletter…

Research News Archive


Current Trials and Studies

Dec 22, 2008: CHOP CoPS Ullrich and Bethlem Study

The CHOP CoPS is a comprehensive study of the clinical manifestations of collagen VI deficiency (Ullrich and Bethlem).

The purpose of this study is to

  1. characterize collagen VI deficiency disease
  2. follow the natural history in both subtypes
  3. understand the impact of collagen VI on the affected person and family.

Participating in this study directly impacts the ability to design meaningful future clinical trials for the Collagen VI disorders. More…

Trials and Studies Archive


Medical Headlines from Other Websites

Jul 3, 2009: Triggering Muscle Development — A Therapeutic Cure For Muscle Wastage?

Scientists in the UK and Denmark have shown that if elderly men were given growth hormone and exercised their legs showed an appreciable muscle mass increase. Dr. Geoff Goldspink (Royal Free and University College Medical School, UK) says: "This raises the question: Can age-related loss of muscle strength and increased fragility be ameliorated by the therapeutic application of mechano growth factor (MGF)?".

Jul 2, 2009: CytRx Files Report With The FDA In Response To The Partial Clinical Hold On Its Phase 2b Arimoclomol ALS Trial

CytRx Corporation (NASDAQ:CYTR), a biopharmaceutical research and development company engaged in the development of high-value human therapeutics, has filed a report with the U.S. Food and Drug Administrations (FDA) in response to the Agency's partial clinical hold on the Company's Phase 2b efficacy clinical trial with its molecular chaperone regulator drug candidate arimoclomol for the treatment of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease).

Medical Headlines Archive

  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...
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