Momentum - Summer 2012

Feed

MS activists on
the frontline

More than 325 people, representing every National MS Society chapter across the country, converged near Washington, D.C., in March for the Society’s 21st annual Public Policy Conference.

Participants attended educational sessions, networked with Society staffers, volunteers and members, and cheered the activists who had been inducted into the 2011 Advocacy Hall of Fame. The three-day event culminated with more than 365 visits to legislative offices on Capitol Hill.

Educational sessions provided updates on federal issues such as the Social Security Compassionate Allowance listing for MS, the Adult Day Achievement Center Enhancement Act and the Affordable Care Act. Most notably, sessions prepared attendees for Hill visits, arming them with information about the dire need for additional funding for MS research and for extension of the Lifespan Respite Care Program. To read more about these issues, visit nationalMSsociety.org/ advocacy.

During Hill visits, MS activists asked members of Congress to prioritize funding for MS research in the 2013 budget through the Congressionally Directed Medical Research Programs (CDMRP)

On World MS Day, May 30, hundreds of thousands of people across the globe will join together to raise awareness of the disease.

To mark the occasion, worldMSday.org;will feature digital postcards on the theme “Living with MS.” To contribute your own postcard, visit the website the first week of May. To learn more and support World MS Day, you can also visit

MSconnection.org.

and the National Institutes of Health, noting that out of hundreds of CDMRP requests, only 14 received funding in 2010. Similarly, the NIH—which has been one of the most significant and successful sponsors of MS-related research in the United States—has not received budget increases that keep pace with inflation.

In advocating for Congressional support for family caregivers through the Lifespan Respite Care Program, MS activists explained that up to 25 percent of people with MS require long-term care at some point, and that 80 percent of long-term care in this country is provided by family caregivers at an annual estimated cost of $450 billion. The Lifespan Respite Care Program is a critical service that enables caregivers to receive support and often permits people with MS to live at home longer.

Finally, MS activists urged representatives to join the Congressional MS Caucus and support MS Awareness Week. To get involved, sign up to receive policy updates on nationalMS society.org/MSactivist; follow @MSActivist on Twitter; and follow the MS Activist blog at www.msactivist.org.

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