We relentlessly advocate for federal, state and local government programs essential to people with MS and we champion the rights of people with disabilities.
2009-2010 Advocacy Year in Review
It takes dedicated activists and coordinated actions to change public policy and make life better for people living with MS. Whether you wrote a letter to your legislator, reached out to others to create awareness about MS, or engaged new people in the MS movement, it’s the collective efforts of MS activists that made all the difference this year. Our advocacy successes are made possible by those who know that change happens through activism. Thanks for taking action!
Among our successes and milestones in FY 2010:
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20 U.S. Congressman representing Texas were visited by five MS activists during the National Public Policy Conference in Washington, D.C. Activists shared their stories and promoted federal policies benefitting people with MS and their families, including family caregiver respite and MS research funding.
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Over 150 participants attended two town hall meetings in the Burleson and Dallas areas in partnership with AARP and Cities Aggregation Power Project. These meetings gave individuals an opportunity to learn about electric utilities, available consumer protections, electricity assistance programs and other resources, as well as a chance to share their story by writing a letter to their state representatives.
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MS activists and staff provided testimony at the Texas Department of Insurance on a new rule that would ban discretionary clauses, or language that makes it easier for insurance companies to deny benefits to consumers. These clauses are found in most disability and health insurance policies and are deceptive and unfair. We are awaiting a decision by the Texas Department of Insurance and hoping the state will join 22 others in banning the clauses and helping protect Texans.
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After months of collaboration with other consumer groups, a new ordinance was passed by the Austin City Council to better protect customers during extremely hot weather, including special customer service for medically vulnerable customers (including those living with MS). Similar models could be used in other municipally-owned utilities around Texas.
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The National MS Society helped lead a group of consumer stakeholders at the Texas Public Utility Commission to push for better protections for individuals with chronic, heat-sensitive diseases (like MS), by delaying electricity disconnection and providing easier access to payment plans during the summer months. New rules on consumer protections should be released this year.
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The Spring MS Walks promoted advocacy by highlighting important activist stories and encouraging support for people with MS through government and activism. Walkers had an opportunity to learn more about legislative issues that affect people with MS and to sign up for our MS Action Alert email network.
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Seven new members were added to the statewide Government Relations Committee (GRC), which meets monthly to discuss advocacy and policy needs in Texas. These volunteers established and voted on our priority legislative issues for the upcoming legislative session, and will help strategize on implementing these priorities as 2011 nears.
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Between November 2009 and August 2010, our Action Alert email network grew by 17% to over 6,300 activists.
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MS Activists Kim & Gary Campbell, Linda Coker, and Dee Ryden were inducted into the Lone Star Volunteer Hall of Fame for their incredible volunteer advocacy efforts.
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On a National level, the Society participated vigorously in efforts to achieve health care reform in the United States by advocating for issues related to the Society’s National Health Care Reform Principles. These principles include eliminating disparities in care, ensuring affordable health care coverage, and access to high-quality, long-term support & services.
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The Society celebrated the 20th Anniversary of the Americans with Disabilities Act, legislation that ensured the civil rights of people with disabilities and expanded opportunities by reducing barriers and shifting perceptions. The Society reaffirmed its commitment to advocating for people with disabilities and pushing for full implementation of ADA law.
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With significant efforts from MS activists, the Society gained support for $15 million for MS research in FY 2011 through the Congressionally Directed Medical Research Program. Texas U.S. Representative Michael Burgess has been instrumental in garnering bipartisan support in the House, with over 95 co-sponsors.
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The MS and Parkinson’s Disease Registries Act has more than 200 co-sponsors in Congress, including Texas U.S. Representatives Burgess, Culberson, Gonzalez, Green, Hinojosa, Sessions, and Thornberry.
- The Society is advocating for full funding for the Lifespan Respite Act, which funds state programs to support family caregivers. The support of MS activists continues to create momentum for funding this bill.