Fall 2011 E-Update
MG Walk Following the success of MGFA’s first series of walks, nine more walks have been scheduled during October and November. They will be held in Oregon, Washington, Missouri, Arizona, and California in addition to a Virtual Walk online. For information on how to register, volunteer or donate, go to www.mgwalk.org or call 1-855-MGWALKS.
New Pod Casts A new podcast on Living a Health and Active Life: A Patient Perspective is accessible on MGFA’s home page, www.myasthenia.org MGFA is planning a special series of six Podcasts for early 2012 that are designed to highlighting the specific needs of teenagers, individuals in their 20s to early 30s, and parent(s) of a child with MG. For more information and to see how you can be involved in planning the Podcasts go to http://www.myasthenia.org/LivingwithMG/PodcastEducationalSeries.aspx
MGFA Scientific Session MGFA sponsored another very well attended annual Scientific Session in September in conjunction with the annual meeting in San Francisco of the American Association of Neuromuscular and Electromyographic Medicine (AANEM). These sessions provide neurologists and others doing basic or clinical research relating to the neuromuscular junction an informal opportunity to discuss their work in progress. Abstracts will be posted on MGFA’s web site, www.myasthenia.org.
MGFA Annual Conference Bally’s in Las Vegas is the site for the 2012 Annual Conference on April 25-27. Watch for details on www.myasthenia.org.
National Institute of Environmental Health Sciences (NIEHS) A group of advocacy organizations, including the MGFA, has become "Friends of NIEHS" to promote the study of environmental triggers of autoimmune diseases as the NIEHS pursues its strategic planning process. The Friends of NIEHS is planning a congressional briefing on October 27 that will include "Children and Autoimmune Disease" as part of the topic. MGFA is a sponsor of this briefing. Creating Hope Act Congressman Michael McCaul (R-TX-10) and Congressman G.K. Butterfield (D-NC-1) introduced the Creating Hope Act of 2011 with Congresswoman Sue Myrick (R-NC-9) and Congressman Chris Van Hollen (D-MD-8) in the U.S. House of Representatives on September 23. This bipartisan bill encourages the development of new treatments for rare and neglected diseases that disproportionately affect children. Read More. Seasonal Flu Shots The Centers for Disease Control and Prevention (CDC) recommends that persons of any age who have certain chronic diseases should get an annual flu vaccination. As with all medications, MGFA encourages you to consult your physician before getting a flu shot. For CDC’s questions and answers about seasonal flu vaccinations, go to http://www.cdc.gov/flu/about/qa/fluvaccine.htm#get-flu U.S. Department of Health and Human Services (HHS) Medicare’s Quality Care Finder The Centers for Medicare & Medicaid Services (CMS) has announced a new Quality Care Finder tool that provides online access to all of Medicare’s "compare tools" on hospitals, nursing homes, home health care and health and drug plans. The tool enables comparisons among similar types of providers and plans and helps people make choices about care for themselves or their loved ones. The tool is available at www.medicare.gov/qualitycarefinder. Medicare Open Enrollment Period This year Medicare's Open Enrollment period is starting earlier – on October 15, 2011 – and ending sooner – December 7, 2011. People with Medicare will have seven weeks to review and choose plans, and get their memberships cards in time for the January 1, 2012 coverage start date. More information is available at Medicare.gov or 1-800-MEDICARE (1-800-633-4227) or 1-877-486-2048 (TTY). Strengthening Public Health Infrastructure and Workforce HHS announced over $40 million in grant funding, partly supported by the Affordable Care Act, to state, tribal, local and territorial health departments and several schools of public health to enhance the nation’s public health infrastructure and strengthen the public health workforce in nearly every state. For more information go to HHS awards $40 million to boost public health infrastructure, prepare tomorrow’s public health workforce Medicare Preventive Benefits The Centers for Medicare & Medicaid Services (CMS) reported in early October that nearly 20.5 million Medicare beneficiaries reviewed their health status at a free Annual Wellness Visit or received other preventive services without having to pay a deductible or cost sharing. For more information, go to More people using free preventive benefits provided by Affordable Care Improved Quality and Access HHS announced a series of initiatives that will help over 900 community health centers and community-based organizations to enhance the quality and coordination of health care services across the country. A total of $47 million was awarded to help improve quality and access to services in every state. For more information, go to Affordable Care Act to support quality improvement and access to primary care for more Americans
White House Disability Office Conference Calls White House staff who work on disability-related policies host a monthly, live-captioned conference call that is open to the public to provide information about important developments on disability issues such as accessibility, employment, education, technology, emergency preparedness, transportation, healthcare and the federal budget. Visit Disability.gov for information about these and many other subjects. The public also has an opportunity to suggest topics for discussion during future calls by sending recommendations to https://www.disability.gov/WHQuestion. National Health Council (NHC) The NHC announced that it has made major strides towards achieving one of its main strategic goals in the implementation of health care reform: to ensure that the definition of the Essential Health Benefits package best meets the needs of people with chronic diseases and disabilities. NHC’s recommendations address three levels of protections -- a balance of cost and quality, adequate support for patient care and decision making, and access to care through use of enforcement tools. Read More.
Preparing for Emergencies Preparation for emergencies such as winter storms, hurricanes, tornadoes, and fires is vital for everyone, and particularly important for people with chronic diseases and disabilities. The Muscular Dystrophy Association’s Preparing for Emergencies: Checklist for People with Neuromuscular Disease is available online in English and in Spanish.
New Jersey Bank’s Novel Fundraising The Ocean City Home Bank is using its “Dress Down Day” (Friday) as a way to support worthy charities. Employees who participate, donate a nominal amount to the charity selected by employees and customers. In the first half of 2011, the bank’s program has raised more than $2,600 for 25 nonprofit organizations, Go to.
OCHB Dress Down Days support local charities