Myotonic Dystrophy Foundation

On the heels of their very successful drive to raise awareness and funds for myotonic dystrophy research, the women's field hockey team at Yale will once again hold a season-long fundraiser for the MDF in honor of rising junior goalkeeper Ona McConnell, who has been diagnosed with this disorder. The campaign, known as "Get a Grip", launches with the team's September 3, 2011 game vs. Stanford.

Nine year old Sam Florence is a superhero to his family and friends. Born with congenital myotonic dystrophy in 2002, those around him are inspired by his superhero might against the daily challenges of this disorder. To help him with his fight, "Sam's Squad" will be running in the White Rock Marathon in Dallas, TX on December 4, 2011 and raising funds for the MDF along the way. 

We are pleased to announce that the agenda and live web streaming links are available for the FDA and NIH co-sponsored meeting ‘Antisense Oligonucleotide Therapies in Neuromuscular Diseases’, taking place on Monday 27th and Tuesday 28th September, 2010 in Washington DC, USA. We hope that stakeholders unable to attend the meeting in person, due to the limited number of spaces available, will be able to utilize these resources to follow the presentations and discussions.

The Muscular Dystrophy Association is hosting its annual myotonic dystrophy weekend, October 2-3, 2010 in Manhattan Beach, CA. The weekend includes a Young Adult Retreat and a Family Conference discussing topics: Understanding What Role Genetics Plays in MMD; Decision Making, Thinking and Processing Issues in MMD and How to Create and Maintain a Functional Family and Support System. Admission is FREE.

The London Health Sciences Centre, London, Ontario, Canada, will be the site of the first Myotonic Dystrophy Education Day. On Saturday, September 18 at University Hospital Patio 2/3 speakers including specialists in genetics, physiatry, speech-language pathology, neurology, and respirology will present information designed to educate and inform patients, families and friends.

Kicking-off the season on September 3rd the Yale Field Hockey team will also be kicking-off their “Get A Grip” campaign to support the Myotonic Dystrophy Foundation (MDF). Motivated by sophomore goalkeeper Ona McConnell’s diagnosis with the disorder, the Bulldogs are dedicating their 2010 season to raising awareness, raising funds and to providing support to Ona and others with this rare disease.

The campaign starts with the season opener against Sacred Heart on Friday, September 3rd at Johnson Field (7:00 p.m.). Yale will be accepting donations for the Myotonic Dystrophy Foundation, the leading global organization whose sole focus is myotonic dystrophy. See the latest press coverage.

In 2002, Run America was started to support a friend with myotonic dystrophy. This year, on August 7-15, founding MDF board member, Barry Wald, along with 20 friends will ride around Lake Michigan to raise money and awareness for myotonic dystrophy.

Mike Hamlin, a one time avid cyclist with myotonic dystrophy, is inspiring folks to join him on this 100 mile ride October 9, 2010 as a part of the annual Sea Gull Century ride. Mike will be participating on this ride on his recumbent trike.