Category Archives: News Scroller

Cure CMD, LGMD2I Fund and Newcastle office are teaming up to prepare for an LGMD2I clinical trial. First step, harmonizing registries. If FKRP, please register in www.fkrp-registry.org  If any other aDG-RD gene involved or unknown, please register in CMDIR, www.cmdir.org

2012 is starting off with a bang- $14,910 raised in response to a $10,000 challenge by Cure CMD’s Chair, Anne Rutkowski, nets $25,000 for research! Consider setting up a monthly donation through our donation page to help us reach our 2012 goal to raise $500,000!!

Phoenix team led by Ann Schrooten, family and friends rolls in over $3,000 for CMD research.  A big thanks to all who participated!

Cure CMD 2012 Funding: CMDIR Project Manager, the Myomatrix 2012 Scientific Conference, an LMNA-CMD iPS cell line and CMD Comparative Outcome Measure Study (CMD COM-Year 3).

Save the date! Webinar on Breathing Issues and Respiratory Management to take place on March 24th, 2012.

Santhera Pharmaceuticals, Cure CMD, UCL/GOSH (Prof. Muntoni), NNDCS/NINDS (Dr. Bonnemann) and Endostem announce decision to proceed with an omigapil pK study in LAMA2 related CMD (Merosin/MDC1A) and Collagen 6 related Myopathy (UCMD, Collagen VI myopathy).  For more information, read below

Join us each month as we publish CMD perspectives articles to highlight how we live our lives, and tricks we have learned to get by and make our lives easier.  This month, Anne Schrooten and Joe Pinkelman lend their perspectives on the importance of connecting, whether through talk, touch or sign language; ways in which [...]

To learn more about BiPAP Click here to watch Luke Hoban’s video on living with CMD and BiPAP Click here to watch Luke’s interview of Lucinda Rosso to get the parent perspective We would like to thank Luke Hoban, Lucinda Rosso, Meera Gandhi and Sarah Dillon for making these videos possible

This year’s goal is to register the global CMD community. Take a moment to register on the CMD International Registry (CMDIR), www.cmdir.org CMDIR in French, German, Spanish, Portuguese and English.  Turkish, Chinese and Danish  coming soon.