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E-Update

Winter 2013 E-Update

Reader Survey

We thank all who responded to our request for feedback to determine if E-Update is fulfilling its purpose of providing readers with announcements, news and alerts that are more time sensitive than MGFA’s bi-annual newsletter Foundation Focus. In response to our e-mail survey, 89.1% of respondents who said that they read the newsletter answered that it provides them with useful information. Therefore, MGFA will continue to publish the electronic newsletter on a quarterly basis.

Conference honors MGFA Member

Robert L. Ruff, MD, PhD, a member of MGFA’s Board of Directors and Medical/Scientific Advisory Board was honored in October for his significant scientific, clinical, and mentoring contributions in the areas of neuro-rehabilitation, neuromuscular transmission disorders, stroke and general neurology. The honor was bestowed during a conference, "Frontiers in Neuromuscular Disease and Neurorehabilitation" that was held at the Louis Stokes Cleveland Department of Veterans Affairs Medical Center where Dr. Ruff is Chief of the Neurology Service. In addition to his positions in Cleveland, Dr. Ruff is the National Director for Neurology at the U.S. Department of Veterans Affairs in Washington DC. Case Medical Center also sponsored the conference, which featured 32 basic and clinical scientists and attracted an audience of more than a hundred attendees from across the United States and from Europe many of whom who had worked with Dr. Ruff or had been trained by him.

MG Walk

The 2013 MG Walk Campaign has begun. The first MG Walks of 2013 will take place during the first weekend of March. Registration for the Spring Walks is now open. Click on http://www.mgwalk.org/mgwalk/findevent_register.asp for dates, locations and registration or call 1-855-MGWALKS.

Smart Phone App – myMG

In December MGFA launched "my MG," an innovative mobile application (or "app") for people with Myasthenia Gravis (MG) to track their MG. To date, more than 400 patients have signed on.

"my MG" is a software application designed to run on smartphones, tablet computers and other mobile devices. With "my MG", the MG community records symptoms and their impact on daily activities. The app allows you to record notes with each survey. The notes can collect information about medicines and life events that can impact MG symptoms. You can then print your notes and survey results from your PC to share with your doctor.

The new app is available free by downloading from the Google app store or iTunes. For patients without access to a smartphone, tablet computers or other mobile device, "my MG" is available online at the MGFA website http://www.myasthenia.org.

MGFA National Conference

Please join us in Miami, Florida for MGFA’s 2013 National Conference!

Wednesday May 8, 2013 – Friday May 10, 2013

Uniting for a Cure
Together We Are Stronger

Intercontinental at Doral Miami
2505 Northwest 87th Avenue

^{Miami, Florida, 33172

For registration information and hotel details, please visit http://www.myasthenia.org}

Seasonal Flu Shots

The Centers for Disease Control and Prevention (CDC) recommends an annual flu vaccination for persons of any age who have certain chronic diseases. According to the CDC "...seasonal flu activity can begin as early as October and continue to occur as late as May." As with all medications, MGFA encourages you to consult your physician before getting a flu shot. For CDC’s information about seasonal flu vaccinations, go to http://www.cdc.gov/flu/protect/keyfacts.htm.

June Awareness Month

June is Myasthenia Gravis Awareness Month. Celebrated every June, it is a call to action for the MGFA community and individual supporters to increase awareness of MG throughout the country. Information including the 2013 June Awareness poster and suggested activities will be available on MGFA’s website at http://www.myasthenia.org. A roundtable discussion “How to Energize Your Campaign and Get Media Attention” has been scheduled for May 10^th during the MGFA National Conference in Miami.

Disability and Public Health in the Media

The American Association on Health and Disability (AAHD) has initiated a new weekly electronic update, Disability and Public Health in the Media. Each Tuesday, AAHD will provide an overview of the prior week’s media coverage on topics related to disability and public health. The goal is to provide information on disability and public health topics that appear in the media at the local, state and national level. Go to www.aahd.us and click on “News” and then “Disability and Public Health in the Media.”

U.S. Department of Health and Human Services (HHS)

Physicians Use of Electronic Health Records is Increasing
HHS reports that more doctors are using Electronic Health Records (EHRs) to improve patient health and safety. For information go to http://www.hhs.gov/news/press/2012pres/12/20121212b.html

Disability News
The current issue of Disability Connection Newsletter is available at disability.gov, the federal government website for comprehensive information on disability programs and services in communities nationwide. The site links to resources from federal, state and local government agencies; academic institutions; and nonprofit organizations. Go to Disability.gov.

Throughout 2012, the website Disability.Blog featured informative posts from Disability.gov’s federal partners and from nonprofit organizations covering topics ranging from housing and health care to employment and emergency preparedness. Guest bloggers share their expertise and personal stories on the website. To see the top 10 guest blogs of 2012 go to Disability.Blog News.

Clinical Trials of Tirasemtiv

Cytokinetics, developer of the investigational drug tirasemtiv, announced the findings from a pivotal clinical trial in patients with generalized myasthenia gravis (MG). In a public announcement, the company reported “positive data from a recently completed Phase IIa “Evidence of Effect” clinical trial of tirasemtiv in patients with generalized myasthenia gravis (MG). Cytokinetics further stated that the main objectives of the trial had been to assess the effects of tirasemtiv on various measures of muscle strength, muscle fatigue and pulmonary function. The drug also is currently being evaluated as a potential treatment for amyotrophic lateral sclerosis, a nerve disorder affecting muscle functioning.

Donald B. Sanders, MD, Chair, Tirasemtiv in Myasthenia Gravis Study Group, stated that the data "suggest that tirasemtiv may have the potential to meaningfully improve the lives of patients with myasthenia gravis and other neuromuscular diseases." Dr. Sanders, a Professor at the Duke University Division of Neurology and Founder of the Duke Myasthenia Gravis Clinic, is also a member of MGFA’s Medical/Scientific Advisory Board. He further stated, “This study provides clear evidence of a pharmacodynamic effect of tirasemtiv to increase skeletal muscle performance and reduce fatigue in patients with generalized myasthenia gravis.” For Cytokinetics' full statement, click on Nov. 26, 2012, press release.

Breast Feeding and Immunosuppressant Drug

The American Society of Nephrology (ASN) announced that breast feeding is “OK” for mothers who are taking the drug tacrolimus that is used after organ transplantation and for other conditions such as myasthenia gravis. In a public statement released on January 24, 2013, the ASN reported: “The breast milk of mothers taking the immunosuppressant tacrolimus contains only very low levels of the drug. Women taking tacrolimus who wish to breast-feed after appropriate counseling should not be discouraged from doing so.” For the full ASN statement, go to Breast Feeding OK for Mothers Taking Immunosuppressant Drug. MGFA encourages women to consult with their physicians before making such health care decisions

National Institutes for Health (NIH) Research Site

The NIH website ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Information about studies related to myasthenia gravis may be obtained through this site. More information is available at: About Clinical Studies and About This Site, including relevant History, Policies, and Laws.

National Health Council (NHC)

The NHC announced that “Lotsa Helping Hands” has released New Year’s Resolutions in support of the 65 million caregivers in the United States. The organization partners with more than 50 of the nation’s leading nonprofit organizations that provide health information and resources to members of its communities. For details go to http://ow.ly/gPoXQ