Myotonic Dystrophy Foundation

CLEARWATER BEACH, FL (December 2-4, 2011): More than 600 members of the myotonic dystrophy community met in Clearwater Beach, Florida for a two day conference presented by the Myotonic Dystrophy Foundation (MDF) in collaboration with the University of Florida and the International Myotonic Dystrophy Consortia (IDMC). The IDMC is a biennial meeting of the international myotonic dystrophy research community. It is made up of researchers and health care professionals whose common aim is to help those affected by myotonic dystrophy (DM) through improved patient care, focused clinical and scientific research or development of meaningful treatments.

Heavy metal band Lamb of God guitarist Mark Morton offers autographed guitar and strings for auction to benefit DM research. 

See Mark Morton talk about and sign the guitar that is up for auction:

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 below.

Molly White joined the Foundation in January 2012 as Executive Director to provide leadership, strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the Foundation and its staff. Molly reports to the MDF Board of Directors and will work closely with them to help propel MDF forward by enhancing the organization’s visibility, establishing priorities and increasing support.

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. The team, made up of friends and family of ten-year-old Sam Florence, who lives with myotonic dystrophy, have been training and raising funds for the past six months. The group set an ambitious goal of raising enough money to fund one year of an MDF research fellowship, or $50,000. We are thrilled to report that Sam’s Squad not only achieved that goal, they doubled it, raising a total $101,120. This gift will fund a full 2-year research fellowship. 
 

Looking to duplicate their wildly successful 2010 campaign efforts, the Yale Women’s Field Hockey team once again accepted the challenge of raising awareness and funds for myotonic dystrophy research through their season-long fundraiser known as “Get a Grip”. Inspired by junior goalkeeper and MDF Board member Ona McConnell, who is living with myotonic dystrophy, the team collected pledges for a season-long “goal-a-thon”, linking every goal they scored to efforts to find treatments and a cure for myotonic dystrophy.

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.

The team found that patients who have myotonic muscular dystrophy are at increased risk primarily for four types of cancer: brain, ovary, colon, and the uterine lining known as the endometrium. The team also found a possible increased risk for some other types of cancer, including cancer of the eye, thyroid, pancreas, and other female reproductive organs.

New Haven, Conn. (November 8, 2011)

It's hard enough being a student at Yale, but even harder being a student athlete.

Now try being a student athlete while all your muscles degenerate; that's what junior field hockey player Ona McConnell does every day.

The goal keeper suffers from a form of muscular dystrophy.

ROSEVILLE, CA (September 9, 2011):  It is with great pleasure that we announce that Dr. Darren Darren Monckton, BSc, PhD, has joined the MDF's Medical and Scientific Advisory Committee. Dr. Monckton is Professor of Human Genetics at the Institute of Molecular Cell and Systems Biology at the University of Glasgow. He is internationally recognized for his work in understanding the mechanism behind myotonic dystrophy and is a widely respected contributor to numerous publications. As part of the MDF's Medical and Scientific Advisory Committee, Dr. Monckton will assist with the Foundation's core mission of empowering families and medical professionals to be informed and engaged as they navigate the disease process.