Monday, November 22, 2010

Society's Joyce Nelson Thanks Senator Byron Dorgan

(left to right): Shawn O'Neail, Vice President of Federal Government Relations; Senator Byron Dorgan (ND);
Joyce Nelson, President & CEO; David Chatel, Executive Vice President of Advocacy
During her visit to Washington, D.C. last week, President & CEO of the National MS Society Joyce Nelson visited Capitol Hill to thank Senator Byron Dorgan (ND) for his lengthy service in the United States Congress and for his bold activism as Senate Co-Chair of the Congressional MS Caucus. Retiring this year, Senator Dorgan served six terms in the U.S. House of Representatives and was elected to the U.S. Senate in 1992. Under his leadership and in close collaboration with Co-Chair Orrin Hatch (UT), the MS Caucus has grown to an impressive 23 members. True to the Caucus's mission, Senator Dorgan has helped raise awareness about MS, actively engages in discussions about access to quality health care, and seeks and pursues creative solutions to the challenges facing people living with MS and their families.

One of his most notable achievements, Senator Dorgan introduced and has helped shepherd through the Senate the National MS and Parkinson's Disease Registries Act (S. 1273). Currently, a national coordinated system to collect and analyze data on MS and other neurological conditions does not exist. Broadened in the House to the National Neurological Disease Surveillance System Act (H.R. 1362), this legislation could help uncover and inform promising areas of research, such as genetic and environmental risk factors and support the discovery of disease therapies, treatments, and one day--a cure. The National MS Society applauds Senator Dorgan for his long-time commitment, as he has undoubtedly helped move us closer to a world free of MS.

Senator Robert P. Casey, Jr. (PA) will serve as MS Caucus Co-Chair, alongside Senator Orrin Hatch, in the 112th Congress.

Thursday, November 18, 2010

Society Participates in AoA Caregiving Celebration

On November 17th, the Society joined the U.S. Administration on Aging to celebrate the 10th anniversary of the National Family Caregiver Support Program (NFCSP) and to launch 2011 as the Year of the Family Caregiver. Secretary of the U.S. Department of Health and Human Services (HHS) Kathleen Sebelius attended the event to highlight the growing importance of caregivers in the upcoming years and ways in which current HHS programs such as NFCSP and the Lifespan Respite Care Program support family caregivers.  The NFCSP provides grants to states to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible. Former Assistant Secretary for Aging Jeanette Takamura under whose leadership NFCSP was established in 2000 attended to discuss the evolution of the successful program and to share her family's personal experiences with caregiving.

HHS Secretary Kathleen Sebelius
A 2010 priority for the Society, the Lifespan Respite Care program provides competitive grants to states to establish or enhance statewide lifespan respite programs, improve coordination, and improve respite access and quality. Lifespan Respite is a particularly valuable program to those living with MS and to their family caregivers because while many other respite programs target the aging population, Lifespan Respite serves regardless of age or disability. While the program has been underfunded since its inception, twenty-four states have received funding to begin building infrastructure. Funding levels for Fiscal Year 2011 are still being determined.

Several national organizations including the National Alliance for Caregiving, the National Family Caregivers Association, the Family Caregiver Alliance, Generations United, and the National MS Society partnered with AoA and at the event, shared various perspectives on caregiving and caregiving policy. National MS Society Associate Vice President of Programs, Services and Clinical Activities Debra Frankel spoke on a panel and discussed the unique issues that people living with MS and their caregivers face.

National MS Society's Debra Frankel Discusses the Unique Experiences of People Living with MS
Current Assistant Secretary for Aging Kathy Greenlee closed the event by recalling several of the dedicated, compassionate family caregivers she has been fortunate to meet over the years and reaffirming AoA's commitment to these vital programs and to 2011 as the Year of the Family Caregiver.

Assistant Secretary for Aging Kathy Greenlee with National MS Society President & CEO Joyce Nelson

Tuesday, November 9, 2010

Congress Returns Next Week. Tell Your Senators About the Importance of S. 1273!

Congress will be back in session the week of November 15 and we need you to email your Senator to ensure S.1273 is passed before the 111th Congress adjourns. This legislation would establish multiple sclerosis (MS) and Parkinson's Disease surveillance systems at the Centers for Disease Control and Prevention. Such a surveillance system would gather all existing data in one location and offer a foundation for evaluating many MS factors such as, geographic clusters of MS diagnoses, variances in the gender ratio, disease burden, and changes in health care practices. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day-a cure.

The House of Representatives passed the companion bill, H.R. 1362, the National Neurological Diseases Surveillance System Act, just before leaving for recess and Senate passage is the last significant procedural hurdle. Click here to email your Senators today about the importance of passing S. 1273 this Congressional session.