Live Stream of MDCC Meeting Shows Advocacy in Action

The Muscular Dystrophy Coordinating Committee brings together advocates and federal agencies with the goal of expanding, strengthening and coordinating MD research and care efforts

Article Highlights:
  • The Muscular Dystrophy Coordinating Committee (MDCC) will hold a daylong meeting on Monday, Aug. 26, beginning at 8:30 a.m. ET. Representatives from muscular dystrophy patient organizations (including MDA) and federal agencies will discuss plans to facilitate and advance muscular dystrophy research.
  • MDA will make two presentations to the committee.
  • The public is welcome to attend in person or via live video stream.
  • The MDCC was created as part of the MD CARE Act — vital legislation that is up for reauthorization before Congress this year. MDA community advocates are working hard to ensure reauthorization of the Act, which provides funding and infrastructure for muscular dystrophy research.
by Quest Staff on August 23, 2013 - 12:35pm

Update (Sept. 4, 2013): A videocast of the Aug. 26, 2013, MDCC meeting is now available. See Muscular Dystrophy Coordinating Committee (MDCC) Meeting — August 2013. Watch presentations by Valerie Cwik, MDA's executive vice president and chief medical and scientific officer, at time point 2:31:47; and Annie Kennedy, MDA's senior vice president for advocacy, at time point 4:11:26.

Want to spend Monday watching advocacy in action advancing the cause of muscular dystrophy research?

Log on to streaming video of the 10th meeting of the Muscular Dystrophy Coordinating Committee (MDCC), on Aug. 26, beginning at 8:30 a.m. ET. The daylong annual meeting in Washington, D.C., brings together representatives from muscular dystrophy patient advocacy organizations, including MDA, and representatives from various federal agencies, with the goal of expanding, strengthening and coordinating MD research and care efforts.

The MDCC is a congressionally mandated committee designed to coordinate research activities across the National Institutes of Health (NIH) and other federal health programs and activities related to the muscular dystrophies, including Duchenne/Becker, congenital, facioscapulohumeral, limb-girdle, myotonic and others.

The purpose of the 2013 meeting is to bring together committee members to update one another on individual agency efforts and to discuss planning for revision of an action plan for the muscular dystrophies.

Two MDA representatives will make presentations to the MDCC: Valerie Cwik, executive vice president and chief medical and science officer, will highlight some of MDA's research, health care services and advocacy initiatives; and Annie Kennedy, senior vice president of advocacy, will speak about MDA’s transitions program for teens and young adults with muscle disease. (See the agenda for a full list of speakers.)

Attend online

The MDCC meeting is open to the public and accessible by live webcast at videocast.nih.gov. Anyone who wishes to attend in person may register by clicking on the registration tab at this link; all others may view the proceedings live online.

(Note: It’s advisable to test video, plug-ins, browser, Java, firewall and bandwidth before watching a live presentation. If there are problems, call the NIH IT Service Desk toll free (866) 319-4357 or send an email to NIH IT Service Desk.)

Brought to you by the MD CARE Act …

The MDCC was created in 2001 as part of the MD CARE Act (Muscular Dystrophy Community Assistance, Research and Education Act), a landmark piece of legislation that is up for reauthorization this year.  The MD CARE Act provides essential government funding for the infrastructure needed to accelerate research and bring drugs to market for all nine forms of muscular dystrophy.

Over the past decade, the Act has funded muscular dystrophy research “centers of excellence” around the country; a muscular dystrophy disease data collection and surveillance project; patient care guides; and other research and health care projects.

Because the Act has been so successful in advancing muscular dystrophy research and improving health care, MDA advocates are working hard to ensure passage of the 2013 reauthorization. Proposed expansions in the 2013 MD CARE Act include, among many other things:

  • expanding muscular dystrophy research to include heart and lung function; and
  • expanding the mission of the MDCC to include developing a plan for speeding government approval of emerging therapies and personalized medicines for people with muscular dystrophy.

Go to MDA's website to learn how you can "Take 5" and help advocate for the reauthorization of this critically important legislation.

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