Home / 2014 Year in Review - Community Activities

2014 Year in Review - Community Activities

Thanks to our community volunteers, 2014 was a great year for MDF! In addition to launching the Medical School Roadshow and Dash & Dine for DM programs, nearly $80,000 was raised by grassroots fundraising. We also grew our support group program to cover 13 US states and 1 Canadian province, with 4 new support groups currently in development! Volunteers around the US and Canada worked tirelessly to put on an incredible number of events and activities.

Click on the links below to learn more about our grassroots initiatives, see photos from our events, or learn how you can get involved in your own town.


Our community fundraisers worked to raise an incredible amount of money and awareness for Care and a Cure this year! MDF volunteers hosted restaurant nights, held carnival-style neighborhood events, and brought together the local scientific community for a networking benefit. Below is just a sample of what the MDF community made happen in 2014.

Dash & Dine for DM

Our newest fundraising initiative, Dash & Dine for DM, launched this spring. Dash & Dine enables community members to raise money for MDF by participating in the athletic event of their choosing, whether it's a 5k, a marathon, a Tough Mudder Challenge, or a bike ride. In the eight months since the program launched, the four teams who have participated have brought in nearly $3,500, and their activities have been quite varied! MDF Office Manager Haley Kennard ran San Francisco's Bay to Breakers race, Eric Jensen and his son River rode across the state of Iowa for RAGBRAI, Team Addison completed a Tough Mudder, and Darren Hanson has run nearly 100 miles between various races over the past six months. 

Muscles for Myotonic

May marked the second-annual Muscles for Myotonic walk, a family-friendly 5k hosted by the Bormann family of Kansas. 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 even more successful than last year, raising over $10,000! As part of her fundraising efforts, Kelly also hosted a Ford Drive 4 UR Community event, where community members could test drive new Ford vehicles and raise money for MDF in the process! Learn more about this year's Muscles for Myotonic or the Ford test drive event.

Team Crawfish Events

On the same day that families gathered in Kansas to walk for DM, over 200 people gathered in San Diego, CA, to eat crawfish for a cure! Each year, the Jensen family 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 at the third annual Crawfish Boil! Soon after, Eric and River jumped on their bikes and rode across Iowa for River's Ride, a Dash & Dine initiative. Learn more about this year's Crawfish Boil or River's Ride.

Grandparents Campaign

The second-annual Grandparents Campaign kicked off on Grandparents Day, September 7th, and concluded in November. This annual event was created to enable grandparents of children living with myotonic dystrophy to get involved in the fight against DM. MDF worked with grandparents from 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 $13,000 was raised by these generous supporters! Read their stories and learn more about the Grandparents Campaign.


MDF's grassroots advocacy program launched on Rare Disease Day 2014, and we are pleased to announce that our first year was a great success! The biggest news of the year out of Washington, DC, was the passage of the MD-CARE Act, a bill dedicated to improving muscular dystrophy research. During the summer, over 400 voices were raised as we educated Congress about DM and the need for better federal funding for rare diseases. You wrote letters and emails, made phone calls, and even visited some district offices in person to get the word out. At the 2014 MDF Annual Conference, our advocacy program was able to really take off: over 70 community members took to Capitol Hill to meet in person with their Senators and staff!

Our work is not done! We have new priorities coming up in 2015, so stay tuned to learn how you can continue our tremendous grassroots advocacy efforts. In the meantime, you can learn more about our advocacy program.

Medical School Roadshow

Over the summer, MDF launched the Medical School Roadshow, a program designed to educate future doctors about DM early in their careers. MDF community members have been meeting with medical students to share their experiences with myotonic dystrophy. If you live near a medical school in the US or Canada and would like to help change the future of DM medical care, please contact Aly Galloway.

Support Groups

MDF's reach continues to grow through our support group network. We have nearly 20 MDF-sponsored support groups in 13 US states and 1 Canadian province, with plans for 4 more to begin soon! We also launched the virtual Caregivers Support Group, an online community and webinar-based support group aimed at bringing together our caregiver community, regardless of physical location. See our list of support groups and resources around the world to see if there is a location near you. Help us continue to reach those in our community by starting a support group near you - contact MDF's Program Director Paul Formaker if you are interested.


Next year we will be adding even more fundraisers and awareness-raising efforts to our roster. Please contact MDF's Development Director Jessica Powers or 415-800-7640 to learn how to get involved.






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