Home / 2013 Year in Review - Grassroots Activities

2013 Year in Review - Grassroots Activities

Thanks to MDF community volunteers, 2013 was a great year for the Myotonic Dystrophy Foundation. In addition to launching our Medical Professionals Referral List and celebrating National Family Caregivers Month, volunteers around the country worked tirelessly to put on a record number of events, bringing our grassroots fundraising total to over $170,000! 

Muscles for Myotonic

April marked the first-annual Muscles for Myotonic walk, a family-friendly 5k hosted by the Bormann family of Overland Park, KS. The walk, intended to spread awareness about myotonic dystrophy and raise funds for DM research, was created in memory of the Bormanns’ daughter Anna, who passed away from DM at six weeks of age. The walk was an enormous success and raised over $8,800. Learn more about this year's Muscles for Myotonic walk.

Jensen Crawfish Boil

Each year, the Jensen family of San Diego, CA, hosts a crawfish boil for over 200 people, complete with fresh crawfish flown in from Louisiana. Live music and festivities—and delicious food—round out the event. In 2012, after Taylor Jensen and her son River were diagnosed with DM, the family decided to turn their annual tradition into a fundraiser for MDF to help fund research focused on finding treatments and a cure for DM. This year's was their most successful event yet. Thanks to the efforts of Eric and Taylor Jensen, along with their friends and families, almost $20,000 was raised! See photos from this year's event on our website.

Dine Out for DM

Our signature fundraising event, Dine Out for DM is an event in which anyone can easily participate. This year, several community members hosted Dine Out nights with local restaurants, designating a portion of the evening's proceeds to MDF. Our largest Dine Out for DM happened on June 21, when MDF Outreach Director Leslie Krongold created a partnership with Daphne's California Greek Café at five locations across the state of California. Over $1,700 was raised in 2013 through the community's various Dine Out events.

Grandparents Campaign

The first-annual Grandparents Campaign, kicked off on Grandparents Day September 8th and concluded in November, was created to enable grandparents of children living with myotonic dystrophy to get involved in the fight against DM. The campaign was the brainchild of Sharon Allison and Mollie McKool of Texas, two MDF grandmothers of children living with DM. MDF worked with grandparents from nine MDF families around the country to develop cards featuring their grandchild's photo and story, which were sent out to their networks of family and friends. Over 150 people donated to this campaign, for a total of $80,370! You can read these families' stories and learn more about the Grandparents Campaign on our website.

Strength, Science, and Stories of Inspiration

MDF Fellow Dr. Eric Wang and colleagues Albert Almada and Sharif Bordbar are all top-notch researchers studying neuromuscular diseases at MIT and Harvard. And, they all have family members living with muscular dystrophy. Together, they hosted a casino night and networking event in Boston to raise awareness of DM, Duchenne, and Becker muscular dystrophies among industry partners and other stakeholders. The event jointly benefitted the Myotonic Dystrophy Foundation and the Muscular Dystrophy Association. Albert, Eric, and Sharif secured $19,000 in sponsorships from leading pharmaceutical and biotechnology firms, and the event netted $22,319. Learn more about Strength, Science, and Stories of Inspiration.

Sam's Squad

2013 marked the second year that Sam's Squad has participated in the Dallas Marathon. Created by the Florence family of Dallas in honor of their son Sam, who is living with congenital DM, Sam's Squad is a running team that uses the marathon as a way to raise money for DM research. In 2011, the first year that Sam's Squad of superheroes ran the Dallas Marathon, 150 runners participated. Unfortunately, the weather in Dallas didn't cooperate this year, and the marathon was cancelled at the last minute. But that didn't stop Sam's superheroes! As of December 17, they had raised over $30,000, earning an anonymous matching gift of $25,000, and donations are still coming in! Learn more about Sam's Squad or make a donation on our website.

Beginning in 2014, we will be adding additional signature fundraisers to our roster. Please contact Aly Galloway at alyssa.galloway@myotonic.org to learn more about hosting a fundraiser, or to obtain a copy of our MDF Fundraiser's Guide.






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