Category Archives: Research News

CMD in China

By anne_rutkowski | Published: July 7, 2011

Dr. Carsten Bonnemann and Dr. Anne Rutkowski, Cure CMD Chairman, traveled to Beijing, China to evaluate 17 families with CMD together with the staff from Peking University First Hospital. The clinic and conference was led by pediatric neurologist, Dr. Hui Xiong.  It was a wonderful opportunity to meet families with CMD in China and recognize [...]

Posted in Research News | Comments closed

CMD Comparative Outcome Measure Study 2011

By anne_rutkowski | Published: July 7, 2011

On June 3-5th, 31 families participated in the CMD Comparative Outcome Measure Study in Bethesda, Maryland. This 5 year study, funded by NIH and Cure CMD is in its 2nd year.  The goal of the study is to define the natural history of collagen 6 and LAMA2 related (merosin) deficient CMD and identify endpoints for [...]

Posted in Research News | Comments closed

Dr. Jim Collins Receives Intramural NIH Award To Increase CMD Biomarker Discovery

By anne_rutkowski | Published: March 22, 2011

Congratulations to Dr. Jim Collins, MD, PhD at Cincinnati Children’s Hospital Medical Center.  Dr. Collins has received an intramural NIH CCTST translational KL2 award. This award will allow him to enroll additional children with Merosin Deficient CMD and Collagen VI CMD.  Dr. Collins was initially funded by a Cure CMD/SAM Research Grant for a pilot [...]

Posted in Research News | Comments closed

Patient Organizations and Research on Rare Disease

By anne_rutkowski | Published: March 20, 2011

Click here to read a NEJM article on the power of advocacy  

Posted in Research News | Comments closed

TREAT-NMD Newsletter: CMD Scientific Resources

By anne_rutkowski | Published: March 13, 2011

Online scientific resources are now available for researchers in the field of congenital muscular dystrophy (CMD). Two new links were created for researchers working to develop potential CMD treatments.  In close collaboration with Cure CMD, a summary of mouse models for the different CMD diseases with links to detailed descriptions was uploaded.  Three biobanks for [...]

Posted in Research News | Comments closed

2nd CMD Science Town Hall Meeting: Saturday March 19th

By anne_rutkowski | Published: February 14, 2011

Join us for the 2nd CMD Science Town Hall Meeting as we talk with Dr. Dean Burkin, Dr. Ana Ferreiro and Dr. Jim Collins about their CMD research funded by Cure CMD/SAM in 2009.  This online (webex) and audio conference call will be moderated by Cure CMD Chairman, Anne Rutkowski, MD and Cure CMD SMAB [...]

Also posted in Events, Medical Conferences | Comments closed

Revised and Updated CMD GeneReview Overview Chapter released!

By anne_rutkowski | Published: January 26, 2011

Thanks to Dr. Susan Sparks, Dr. Susana Quijano Roy and Dr. Amy Harper and the GeneReview editorial staff fot their tremendous work in revising and updating the CMD Overview Chapter, which provides current information on how to diagnose and manage CMD.   Next stop: revision of the Laminin Alpha 2 Deficient (Merosin Def) CMD. To [...]

Posted in Research News | Comments closed

Cure CMD funds over $250,000 in CMD research in 2010

By anne_rutkowski | Published: December 16, 2010

Cure CMD funds $280,000 in research in 2010, bringing totals spent on CMD research in the last two years to over $1/2 million.  Two years funding in partnership with SAM.  Per Cure CMD’s Chairman, Anne Rutkowski, “Funding at this level has brought an increased focus to CMD science and drives the identification of new treatment [...]

Also posted in Press Releases | Comments closed

CMD Science Town Hall Meeting: CMD Comparative Outcome Measure Study, Dec 4th, 2010

By anne_rutkowski | Published: December 12, 2010

The first CMD Science Town Hall Meeting presented the CMD community with preliminary results of the CMD Comparative Outcome Measure Study, Part One which took place at NIH in June 2010 and was funded by Cure CMD and the National Institute of Neurologic Diseases and Strokes (NINDS).

Posted in Research News | Comments closed

Santhera Obtains European Patent For Use of Omigapil for the Treatment of CMD

By anne_rutkowski | Published: December 6, 2010

Santhera announced today that the European Patent Office granted patent protection for the use of omigapil for the treatment of Congenital Muscular Dystrophy through 2026. Click here

Posted in Research News | Comments closed