| |
|

GLARING UNMET NEEDS
Because LGMD2A is less prevalent and the clinical course, in many cases, is less severe than other forms of muscular dystrophy, it attracts significantly fewer research dollars and thus fewer researchers working to understand the disease and discover a cure. Prior to the founding of C3:
- the biology of LGMD2A was and still is not completely understood and there is no cure or treatment
- there had never been a workshop held specifically for LGMD2A researchers.
- there was and is little awareness of LGMD2A among the general public
THE PLAN OF ACTION
Coalition to Cure Calpain 3 (C3) was founded in 2010 for the specific purpose of funding research efforts focused on understanding the biology of and finding a cure for LGMD2A/Calpainopathy. This organization was created by people with LGMD2A for people with LGMD2A as both founders have this progressive disease.
We are motivated by our desire to encourage collaboration among scientists, those who have LGMD2A, their families, friends and the community-at-large to bring an end to this under-researched, underfunded "orphan" disease.
THE TEAM
BOARD OF DIRECTORS
Jordan Boslego, President
- Founder of C3 patient registry
- Works in asset management in New York
- A.B. in Economics and Statistics from Harvard College, cum laude with High Honors
- Diagnosed with LGMD2A in 2005
Michele Wrubel, Senior Vice-President/Secretary
- Co-founder of Coalition to Cure Calpain 3 in 2010
- Decade of non-profit experience in leadership positions; formerly a media supervisor at Ammirati & Puris/Lintas
- B.S. from University of Rhode Island, summa cum laude
- Diagnosed with muscular dystrophy in 1989 and LGMD2A in 2007
Lee Wrubel, MD, Treasurer
- Co-founder and General Partner of Foundation Medical Partners
- Previously an investment professional specializing in biotechnology and medical device investments with Canaan Partners and Highland Capital Partners
- Serves on Translational Research Advisory Committee of the Muscular Dystrohpy Association
- A.B. from Lafayette College, MD and MPH from Tufts University, MBA from Columbia University
Demosthenes Madureira de Pinho Neto, Director
- CEO of Brazil Warrant (a holding company with interests in Banking, Mining and Agriculture) and Member of the Board of Directors of Itau Unibanco and CBMM
- Over 25 years of experience in the financial sector as a consultant and executive
- Former Director of the Central Bank of Brazil
- CEO of Dresdner Asset Management (1999-2002)
- Executive director of Unibanco and Unibanco Asset Management (1994-1997)
- CEO of Unibanco Asset Management (2004-2008)
- CEO of Itau-Unibanco Asset Management (2008-2011)
- B.A. and M.S. in Economics from Catholic University of Rio de Janeiro; M.A. and Ph.D. in Economics from University of California, Berkeley
SCIENTIFIC ADVISORY BOARD
Melissa Spencer, PhD, Chair
- Associate Professor of Neurology at University of California, Los Angeles
- Co-Director of the Center for Duchenne Muscular Dystrophy at UCLA
- Recipient of PECASE, the nation’s highest honor for professionals at the outset of independent research careers (2001)
- Has spent the past decade studying calpain 3 and LGMD2A
Dr. Kevin Campbell, PhD
- Roy J. Carver Biomedical Research Chair in Molecular Physiology and Biophysics, University of Iowa
- Investigator with the Howard Hughes Medical Institute
- Director of the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center and internationally recognized for fundamental contributions to muscular dystrophy research
- March of Dimes Prize in Developmental Biology for pioneering research on cell mechanisms involved in MD (2009)
Dr. Eric Hoffman, PhD
- A. James Clark Chair in Molecular Genetics and Director of the Center for Genetic Medicine Research, Children’s National Medical Center
- Chair, Department of Integrative Systems Biology, George Washington University
- Over 400 publications; laboratory increasingly focused on novel drug development programs
- Emphasis on gene identification, pathophysiological studies, molecular diagnostics and therapeutics
|
|
|

Identify and Support Promising Research and Emerging Technology Focused on Understanding the Biology of and Finding a Cure for Limb-Girdle Muscular Dystrophy, Type 2A (LGMD2A), Also Known as Calpainopathy

Organize and Sponsor Scientific Workshops Focusing Specifically on LGMD2A: First Ever U.S. Conference of this Type was Held in Santa Monica, California on October 27, 2011. Click here to Read Abstracts Presented at the Meeting.

Support the Existing Effort to Create an Internationally Recognized Patient Registry: Register NOW!

Increase Awareness of LGMD2A by Shining a Spotlight on this Under-researched, Under-funded and Under-recognized “Orphan” Disease
|
|