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U.S. Legislative Update for Neuromuscular Diseases

Currently, important legislation affecting the neuromuscular disease community in the U.S. remains under consideration. As members of this community, it is important to remain informed about this legislation and to act in support of any legislation that is important to you by contacting your legislators, and even attending an important Congressional briefing for the MD CARE Reauthorization Act if you are able.

-- The MD CARE Reauthorization Act has not yet been ratified. There will be an important Congressional briefing on this important Act on February 25, 2014. During this meeting, the impact of this important legislation on research and on the lives of individuals affected by neuromuscular disease will be reviewed. As a member of the neuromuscular diseases community, the Foundation to Eradicate Duchenne (FED), Muscular Dystrophy Association (MDA) and the Parent Project Muscular Dystrophy (PPMD) have extended an invitation to you to attend this briefing. Read about this important Congressional briefing and RSVP to attend if you are able.

-- The Achieving a Better Life Experience (ABLE) Act of 2013, which will improve the ability of those with disabilities and their family members to save money for future expense related to disabling conditions, remains under consideration.

-- The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281 / S. 1417) also remains under consideration. This important ACT will allow federal programs to continue to support state newborn screening programs. You can read more about this important program my article listed below.

-- The Affordable Care Act (ACA) was passed in 2013. The full effect of the ACA on the neuromuscular diseases community remains to be seen. The MDA provides important about the ACA and links to further information and points of access.

Resources:

MDA, (2014). Affordable Care Act (ADA). Retrieved from http://mda.org/services/affordable-care-act on 2/15/14.

MDA, (2013). Become an Advocate. Retrieved from http://www.mda.org/advocacy/becomeanMDAadvocate on 2/15/14.

MDA, (2014). Legislation. Retrieved from http://mda.org/advocacy/legislation on 2/15/14.

MDA, (2014). MD-CARE Act Reauthorization Congressional Briefing. Retrieved from: http://mda.org/advocacy/md_care_congressional_briefing on 2/15/14.

Reijonen, J., (2013). Legislative Advocacy and Neuromuscular Disease. Retrieved from http://www.bellaonline.com/articles/art180080.asp on 2/15/14.

Reijonen, J., (2013). Newborn Screening and Neuromuscular Diseases. Retrieved from http://www.bellaonline.com/articles/art180851.asp on 2/15/14.


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This content was written by Jori Reijonen, Ph.D.. If you wish to use this content in any manner, you need written permission. Contact Jori Reijonen, Ph.D. for details.



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