Benjamin’s story
Following 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.
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
- characterize collagen VI deficiency disease
- follow the natural history in both subtypes
- 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…



