Advocacy Resources
Government Resources
Whether your most recent exposure to government was in a fourth-grade history class or a doctorate level policy course, you can effectively advocate for yourself and your community by accessing the right tools. The following resources are provided to further empower you. Remember ... Your most powerful resource is your personal experience, and elected officials are put in office to represent the concerns and issues that matter most to you.
For questions about any of the listings, please contact your local MDA office or email MDA’s national Advocacy office at advocacy@mdausa.org.
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
School Advocacy
The following materials and resources are intended to be used as tools to help you ensure that your child's school experience is as rigorous and supportive as possible. If you are facing a legal matter, contact your local MDA clinic social worker, state department of education or state disability law center.
For additional information about accommodations for specific neuromuscular diseases, or to arrange for classroom presentations (or presentations for faculty members) by MDA staff, please contact your local MDA office.
|
|
|
|
|
|
|
|
|
|
|
|
MDA on the Record
Coalition Letter of Support The Honorable Mary K. Wakefield for the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) - February 23, 2013
Letter of Support to Senator Klobuchar, Senator Wicker, Congressman Burgess, and Congressman Engel for the reauthorize the Muscular Dystrophy Community Assistance, Research and Education Amendments (MD CARE Act) - February 13, 2013
Coalition Letter of Support for the TREAT Act (Transforming the Regulatory Environment to Accelerate Access to Treatments Act) - March 23, 2012
Coalition Letter of Support to Congress regarding the FAST Act (Faster Access to Specialized Treatments Act) - March 23, 2012
Coalition Letter of Support to Congress regarding extension of the Therapeutic Discovery Project Tax Credit - December 14, 2011
Coalition Letter of Support to Congress regarding extension of the Therapeutic Discovery Project Tax Credit - December 14, 2011
Coalition Letter of Support to the Joint Committee on Deficit Reduction to maintain current Medicare B reimbursement - October 07, 2011
Coalition letter of support for the National Center for Advancing Translational Sciences (NCATS) - July 29, 2011
Coalition Letter of Support to Congress regarding H.R. 1041 (Fairness in Medicare Bidding Act) - March 28, 2011
Coalition Letter of Support to Congress regarding further extension of the therapy cap for outpatient physical therapy, occupational therapy and speech-language pathology services - November 12, 2010
Coalition Letter of Support to Speaker Pelosi regarding rectifying the omission of neurology in HR 3590 and HR 4872 - September 18, 2010
Coalition Letter of Support to Congress regarding H.R. 3790 (Medicare Competitive Bidding Repeal Act) - July 15, 2010
Coalition Letter of Support to Senate Labor HHS Appropriations Committee for funding of newly established Cures Acceleration Network (CAN) - April 16, 2010
Letter to Congress Regarding Regulatory Pathway for Biosimilars from Coalition of Advocacy Groups - January 14, 2010
Lifetime Caps Coalition's Letter to Congress Regarding Health Reform Bill - January 08, 2010
Letter from MDA and Coalition of National Patient Advocacy Groups to Representative Meek in Support of H.R. 3790 to Repeal Competitive Bidding - December 09, 2009
Letter to Senate Finance Committee from Coalition of Patient Advocacy Groups on Importance of Comparative Effectiveness Research based on 'clinical effectiveness' - December 03, 2009
Letter from MDA and various other health care organizations to Majority Leader Harry Reid, Republican Leader Mitch McConnell, Speaker Nancy Pelosi and Republican Leader John Boehner about the Therapeutic Discovery Project Tax Credit - October 19, 2009
Letter from Dr. Valerie Cwik, MDA senior vice president for research and medical director, to Tony Merlin, M.D., Deputy Director of the Influenza Coordination Unit at Centers for Disease Control and Prevention about pro-active measures to protect the MDA - September 02, 2009
Letter from Dr. Valerie Cwik, MDA Senior Vice President – Research & Medical Director to the CDC on the importance of, and recommendations for, design and implementation of the National ALS Registry - July 24, 2009
Letter from MDA and 58 organizations urging inclusion of rare disease as an area deserving "special consideration" in the Small Business Innovation Research (SBIR) program reauthorization - July 07, 2009
Letter from MDA’s President and CEO, Jerry Weinberg, to Charlene M. Frizzera, acting administrator, Centers for Medicare and Medicaid Services, on competitive bidding and Medicare - February 12, 2009
Letter from MDA and 65 health care organizations to Chairman and Ranking Member of the Senate Committee on Appropriations and the Chairman and Ranking Member of the Senate Appropriations Subcommittee on Labor, HHS and Education. - January 26, 2009
Letter from MDA and 30 health care organizations to House and Senate Leadership urging them include funding for small, research-intensive biotech companies in stimulus package - December 19, 2008
Letter from MDA and 59 health care organizations on the reauthorization of the Small Business Innovation Research program – September 18, 2008 - September 18, 2008
Statement from MDA’s National Chairman, Jerry Lewis, on the introduction of the MD-CARE Act Re-authorization - May 04, 2008
Call to Action Letter from MDA to SMA Families on the SMA Treatment Acceleration Act - May 02, 2008
Letters from MDA’s President and CEO, Jerry Weinberg, on the SMA Treatment Acceleration Act - April 10, 2008
Letter from Jerry Lewis on Medicare Competitive Bidding - October 03, 2007
Letter from MDA’s National Task Force on Public Awareness to Representative Allen on Medicare Competitive Bidding - July 06, 2007
Quest and ALSN articles
- Resource Roundup: IEP and 504 Plans — April 1, 2011
- Desktop Invention Helps Students Succeed — October 1, 2011
- Read Any Good E-Books Lately? — March 31, 2010
- Buddy Up: MDA's Educational Advocacy Initiative Is Your School Partner — March 31, 2010
- As If High School Weren't Tough Enough ... — July 1, 2009
- Did Someone Say 'Recess'? — July 1, 2009
- 504 Plans: What Parents Should Know — April 1, 2009
- Getting Creative with Adaptive P.E. — April 1, 2009
- IEP Resources for Assistive Technology and Learning Disorders — March 1, 2008
- How to Get Your Child's School to Provide Assistive Technology or Help with Learning Disabilities — March 1, 2008
- Building the IEP Puzzle — March 1, 2007
- Friendships Matter: A New IDEA — March 1, 2005
- Friendships Matter: Building IEPs that Build Social Relationships — March 1, 2005
- Law Requires Mediation in Special Ed Disputes — March 1, 2005
- Homebound Programs: Two stories — February 1, 2002
- Homeschooling: Two stories — February 1, 2002
- Learning at Home — February 1, 2002
- Joseph’s IEP — January 1, 1997
MDA offers webinars on a variety of topics that are of importance to the MDA community. These webinars are led by individuals affected by neuromuscular disease and/or other experts in the subject matter. Some webinars are disease-specific in nature, but many feature information that’s applicable to everyone in the MDA community.
Connect with MDA
Muscular Dystrophy Association — USA
National Headquarters
3300 E. Sunrise Drive
Tucson, AZ 85718
(800) 572-1717
©2013, Muscular Dystrophy Association Inc. All rights reserved.
