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Blog - Our Voice

03/06/2012
Angela Wrigglesworth

Annie Kennedy presented this afternoon about a topic that is near and dear to my heart — transitions and the role that advocacy has played at MDA in recent years.

  1. There is truly an Advocacy Movement within MDA — a cultural shift in which the organization is listening to the voices of young adults who are aging and dealing with issues that have not been addressed before.
     
  2. Efforts to gain the attention of Capitol Hill are happening daily. Through both the MDA Advocacy office in Washington, D.C., and the firm King and Spalding, we are knocking on representatives’ doors so that they will in turn knock down the barriers that prevent success for people with neuromuscular diseases.
     
  3. The Transition Summit held last September in Washington, D.C., in which I was honored to have been a participant, was an event unlike any other. During this monumental day of change, panelists discussed key issues regarding transition with representatives of significant national organizations and policy makers.
     
  4. There was a huge need for convenient Web access to all things related to advocacy and transitions and thus the Transition Center website was born. Have you visited transitions.mda.org? You better get on that pronto—Annie and a crew of others have worked tirelessly to make this page useful and applicable to our everyday lives!
     
  5. The Advocacy Movement is responsible for one of the most innovative approaches to legislative lobbying. Ever heard of a Fly Out? Well get ready to be involved! Often times organizations “fly in” families to Washington during legislative sessions for lobbying purposes. This is rather time-consuming, financially taxing, and limits participant numbers and availability. MDA’s idea was to mobilize patients all over the country by bringing them to their local representatives’ offices. Please consider joining the 2012 MDA Fly Out —keep your eyes on the Transitions Center for more information.

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