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I am often asked: "How can I help in the fight to end Duchenne?" and "What are things I can do to make a difference?" My answer is always Advocacy.

You are already natural advocates. You began advocating the day you received the diagnosis, or found out someone you cared about was affected by Duchenne. Advocacy takes many forms. One of the most important ways is the interaction between citizens and those elected to represent them in Congress to change the status quo. For our community, we advocate in the hope of improving the lives of those you love by advancing research, improving care standards, and ensuring the proper resources exist to expedite treatments for Duchenne. A small group of Duchenne advocates have made such a tremendous difference in the lives of so many Duchenne patients and families by telling their stories to those who represent them in Congress.

The cornerstone of our advocacy efforts in Washington has been the MD-CARE Act. First passed in 2001, this banner legislation has been a pivotal piece of the successes we’ve had in advancing the fields of research and care. This bill laid the foundation for the successes we have seen in the last decade, and was reauthorized in 2008 after the community worked hard with members of Congress to ensure its passage.

Here is what has been yielded from our efforts:

  • Over $400 million has gone into muscular dystrophy research, leveraging additional millions in private investment.
  • Care Standards have been established and published and are in the process of being disseminated. These standards have added 10 years to the lives of those living with Duchenne.
  • The MD STARnet program has yielded important data on incidence prevalence and burden of cost for those living with Duchenne.
  • Six (rotating) cooperative MD research Centers of Excellence were established by the National Institutes of Health (NIH). The centers work individually and collaboratively. Each has both basic and clinical research projects, and one or more core facilities to support them.
  • The public-private Muscular Dystrophy Coordinating Committee, established under the bill, has worked to expand, intensify, and coordinate research activities related to muscular dystrophy.


None of these accomplishments would be possible without the power of your voice. From constituents telling their stories to members of congress to advocating for more money for research, care, and improvements in regulatory processes – patient advocacy has made a tremendous difference in the fight to end Duchenne. Over the last decade you spoke up and Congress listened. We must continue to raise our voices. We compete with so many others trying to be heard, and in order to remain on the radar of the federal government we must remain vigilant with a consistent message.

Take Action - Tell Congress to Reauthorize the MD-Care Act!

All authorizing legislation must be reauthorized every five years. We are embarking upon another reauthorization year for our bill and need your voice.

How can you help? We’ve put together a landing page that you can share with your family, friends, and neighbors—really anyone who cares about changing the course of Duchenne. Join us in Washington, Add your name to our packet drop, sign up for advocacy alerts – lend your voice to ours!

Please visit our Get Active page page to learn more how you can get involved.

 


Ryan Fischer, Director of Outreach & Advocacy
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Comment by SAHHID ZUBAIR on January 22, 2013 at 1:13am

MAY GOD BLESS YOU as you people are a hope for hopeless kids and families. Your soft heartiness and helping attitude give life to those fighting for life.

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