Author Archives: anne_rutkowski

Cure CMD, LGMD2I Fund and TREAT-NMD/Newcastle: Teaming Up to Prepare for LGMD2I Trial

By anne_rutkowski | Published: January 30, 2012

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

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FKRP and CMDIR Registries: Working Together

By anne_rutkowski | Published: January 30, 2012

Cure CMD, the LGMD2I Fund and the Newcastle TREAT-NMD office announce a collaboration to promote clinical trial readiness for LGMD2I.  In anticipation of an LGMD2I clinical trial, we are working to align the 2 existing registries, one specific for FKRP and one for each of the other CMD-LGMD alpha dystroglycan related dystrophy (aDG-RD, dystroglycanopathy) genes. [...]

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New Year’s Challenge Brings in $25,000 for CMD research

By anne_rutkowski | Published: January 23, 2012

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!!

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Phoenix Team Rolls in $3240 towards CMD research

By anne_rutkowski | Published: January 23, 2012

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

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Cure CMD Funding Priorities for 2012

By anne_rutkowski | Published: December 27, 2011

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).

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Cure CMD funds $245,000 in CMD research in 2012!

By anne_rutkowski | Published: December 27, 2011

Cure CMD announces 2012 Grants for research in LMNA-RD (Lamin A/C related dystrophy), LAMA2-RD (Laminin alpha 2 related dystrophy), COL6-RM (Collagen VI related myopathy) and aDG-RD (alpha dystroglycan related dystrophy).

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Cure CMD teams up with LGMD2iFund to develop antibodies for aDG-RD

By anne_rutkowski | Published: December 27, 2011

The project led by Professor Glenn Morris and Dr. Sue Brown with assistance from Dr. Andrea Brancaccio will use 3 distinct approaches to develop additional antibodies to stain the protein αDG in the muscle membrane. 

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Cure CMD 2012 Grant Funding

By anne_rutkowski | Published: December 27, 2011

William Cruikshank, PhD (Boston University) received $25 K two year grant award to study breathing issues in the DyW  mouse model of LAMA2-CMD (MDC1A, Merosin Def CMD).  The 2 main goals of this study are to investigate whether the mouse model suffers from progressive breathing problems and thus models human disease and whether a pharmacologic [...]

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Kennedy’s Story

By anne_rutkowski | Published: December 3, 2011

When Kennedy was three she had slight difficulty climbing stairs and fell a lot. She also walks on her tiptoes. It was hard to let doctors see this in an office setting. We started out ruling out a slight cerebral palsy, also wore AFO’s thinking she was just a tippy toe walker. I was told [...]

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Support ABLE Act

By anne_rutkowski | Published: November 21, 2011

We’re calling all members of our MDA community to support the Achieving a Better Life Experience (ABLE) Act of 2011, which helps Americans with disabilities save money for the future. On November 15, Representatives Ander Crenshaw, R-Fla., Cathy McMorris Rodgers, R-Wash., and Senator Robert Casey, D-Pa., introduced the ABLE Act (H.R. 3423/S. 1872) in the [...]

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