Home / Driving Care and a Cure - the 2014 Work Plan

Driving Care and a Cure - the 2014 Work Plan

This past weekend the MDF staff and board of directors met for two days of strategic planning in San Francisco to evaluate the work accomplished in 2013 and identify the project plan for 2014. We made some great strides last year, including:

  • Launching the Myotonic Dystrophy Family Registry, which now has more than 1,100 registrants—including patients, clinicians and scientists—and is one of the leading registries for DM patients
  • Launching seven new support groups around the U.S. and Canada
  • Creating the monthly “Living with DM” webinar series
  • Launching the physician referral VIP List and doubling the size of the online Digital Academy
  • More than doubling the funds raised in 2012
  • Helping hundreds of patients with Warmline phone support and follow up
  • Celebrating the importance of DM caregivers during National Family Caregiver Month
  • Expanding conference activities and sessions, including adding live streaming
  • Increasing communications through a stronger social media presence (Facebook, Twitter and Instagram and YouTube) and twice-monthly newsletters

We’re pleased with our progress thus far, and we will continue to push forward with additional programs and efforts in 2014.  Some highlights you can look forward to in the year ahead include:

  • CARE:
    • Continuing to expand regional support groups and monthly webinars
    • Launching caregiver-specific support groups and programming
    • Participating in the Christopher Project, a large multi-year effort launched by the Marigold Foundation to capture feedback and data on care and care opportunities from the patient and family community
    • Evolving the current MDF Scientific Advisory Board into a Clinical Advisory Board and a Scientific Advisory Board
    • New website content to make DM disease information more accessible, including animated videos
    • and more
  • CURE:
    • Feasibility studies for the first significant prevalence study for DM1 & DM2
    • Continuing to expand the Myotonic Dystrophy Family Registry and update the records of current registrants
    • Launching, funding and supporting important studies such as HELP-CDM, Pregnancy Impacts on Women with DM and various efforts currently using the Myotonic Dystrophy Family Registry
    • Expanding the scope and breadth of the Fund A Fellow postdoctoral grants program
    • Providing grant writing training for young investigators to help them access additional research funds
    • Exploration of support for the development of DM animal models
    • and other efforts
  • Advocacy:
    • Launch our first-ever grassroots advocacy program and training
    • Seek appointment to the NIH Muscular Dystrophy Coordinating Committee (MDCC), which coordinates activities across NIH and with other Federal health programs and activities relevant to the various forms of muscular dystrophy, and update the current Muscular Dystrophy Action Plan to include significantly more myotonic dystrophy-related information and recommendations
    • Ensure that key Federal agencies, such as the FDA, understand myotonic dystrophy and our community
    • Drive a year-long advocacy program, including community letter writing, packet drop off and Hill visits coordinated and led by MDF staff
    • Create a first-ever advocacy training track at the MDF Annual Conference, which will be held in WA, DC in 2014
  • Infrastructure:
    • Evolve the fundraising, staff and organizational infrastructure to increase the capacity of the organization and create long-term stability

We are excited about the year ahead and what we intend to accomplish.  We'll keep you abreast of our activities and progress via the Dispatch and our social media communication. If you aren't already receiving our information, click here to contact our Program Associate Conor Lynch and follow up.






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