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Winter 2012 - Volume 6 |
Dedicated to Education, Advocacy, Research and HOPE |
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To Our Myotonic Dystrophy Community,
In 2011 the MDF board of directors made a commitment to address the increasing demand for MDF programs and services, enhance our ability to create strategic priorities and initiatives, and broaden and deepen our funding base.
To this end, the Foundation embarked on a series of staff changes in Fall 2011. I am delighted to report that this staff development process is now complete. Please join me and the rest of the Foundation board of directors in congratulating and welcoming the team.
Please read on.
Sincerely,
Jeremy J. Kelly
Chairman
Myotonic Dystrophy Foundation
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EMPOWER 2011 Myotonic Dystrophy Family Conference
Brings 600 Patients and Researchers Together
CLEARWATER BEACH, FL (December 2-4, 2011) More than 600 members of the myotonic dystrophy community met in Clearwater Beach, FL for a two day conference presented by MDF in collaboration with the University of Florida and the International Myotonic Dystrophy Consortia (IDMC). Attendees heard the latest updates on research and received information about diagnosis, treatment and daily living issues. The weekend was packed with presentations, breakout sessions and opportunities for families to have questions answered by health care professionals and to network with others in the DM community. Learn more about the event.
Now you can watch the videos from the conference archive for updates from leading researchers and clinicians. View the video archive.
MDF Awards $400,000 for Research Into Treatments for Myotonic Dystrophy
ROSEVILLE, CA (January 2012) - MDF is pleased to announce its 2012-2013 round of $100,000 awards under its "Fund-A-Fellow" postdoctoral fellowship research program. We created this program to encourage basic research in the management, treatment and cure of myotonic dystrophy (DM) through the training of new investigators with outstanding potential to make future contributions to DM research. The postdoctoral fellows work in clinical, basic, or applied research in the areas of pathogenesis of myotonic dystrophy, disease progression, best practices in the management of the disease, and therapeutic and diagnostic development. Learn more.
Make a Donation, Make a Difference
In 2011, thanks to generous support from the MDF community, the Foundation was able to dramatically expand our patient and family programs, increase our research fellowships and better mobilize resources targeted at effectively managing, treating and ultimately curing myotonic dystrophy. In 2012, we want and need to do even more. Learn more about how you can help us make a difference.
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Updated Physical Therapy Assessment Tool for Professionals
An updated version of the publication, "Role of Physical Therapy in the Assessment and Management of an Individual with Myotonic Dystrophy" is now available on our website. Learn more.
Myotonic Dystrophy Linked to Increased Risk for Cancer
People who have the most common type of adult muscular dystrophy also have a higher risk of getting cancer, according to a paper published in the Journal of the American Medical Association. Learn more.
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Sam's Squad Update: A Successful Run for Research and Awareness
A little freezing rain and wind didn't deter Sam's Squad from running and walking a total of 772.9 miles in, and volunteering more than 400 hours for, the Dallas White Rock Marathon on December 4, 2011. And you won't believe how much they raised for DM research! Learn more.
2011 Yale "Get a Grip" Campaign: A Championship Effort
Looking to duplicate their wildly successful 2010 campaign efforts, the Yale Woman's Field Hockey team once again accepted the challenge of raising awareness and funds for research through their season-long fundraiser known as "Get a Grip". Find out how the team did both on and off the field. Learn more.
"Lamb of God's" Mark Morton "Dominion" Guitar Auction!
Fans of the heavy metal band "Lamb of God" now have a chance to own a piece of musical history, and help find a cure for myotonic dystrophy. Lead guitarist Mark Morton has donated a custom-designed and signed Jackson guitar from his personal collection, and the strings and picks used to record songs off their just-released album, Wrath. All proceeds from the sale, which will be auctioned on eBay from Thursday, January 26 through Sunday, February 5, will be given to MDF to support research programs.
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