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Foundation Focus Newsletter
E-Update Autumn 2015 Edition
Alert about Vaccinations, Including Flu Vaccine
: It is generally believed that vaccinations, e.g. influenza, are safe in patients with MG (with a major caveat below). The evidence suggests that vaccine-related worsening of MG is rare and thus most MG specialists believe the benefits of immunization outweigh any small risk related to possible transient worsening of MG symptoms.
If you are taking immunosuppressive medication such as Prednisone, Azathioprine or Mycophenolate, it is usually recommended that you avoid live, attenuated vaccine. Examples of live, attenuated vaccines include the shingles vaccine and the nasal spray form of the influenza vaccine (The influenza injection is inactivated and thus not alive, so it is much safer in immunosuppressed patients.) Discuss this with your physician.
As always, please consult your physician regarding your individual case.
2016 National Conference
Following the successful conference In San Diego this year, plans are underway for MGFA’s 2016 conference, which will be held in Raleigh, North Carolina on May 1-3. Videos from the 2015 conference presentations are available at
After an inspiring and successful 2015 Spring MG Walk season, raising more than $464,000, the Fall season will include more than 20 events around the country with countless opportunities for you to raise awareness and join the fight against Myasthenia Gravis. In order to reach our 2015 goal of $900,000, we need YOUR support!
A full list of Fall 2015 MG Walks can be found on our website,
Please strongly consider joining an upcoming MG Walk as a team captain.
If you have any questions, need help registering or setting up your free personal fundraising page, please do not hesitate to reach out to the MG Walk Office at 1-855-MG-Walks or
. The MG Walk team is always here to assist you in achieving your personal and team goals and beyond! Follow the MG Walk Campaign on the Campaign
as well as on the MG Walk Facebook
for unique fundraising tips and stories about fellow MG Walkers!
Thank you all for taking this journey to date and for continuing to take the steps with us to reach that ultimate goal – a world without Myasthenia Gravis!
Essential Foundations – Research Standards for MG Pre-clinical Research
In August, the Myasthenia Gravis Foundation of America (MGFA) announced the publication of a special issue of the journal,
that is focused on pre-clinical standards of research in Myasthenia Gravis, a major step forward in advancing MG research. To develop these standards, the National Institute of Neurological Disorders and Stroke (NINDS/NIH), the MGFA and the George Washington University sponsored a workshop,
Standards of Pre-clinical Efficacy in Experimental Myasthenia Gravis
in September 2014. Through a process of knowledge sharing, discussion and consensus building, experts in pre-clinical research design and animal models of MG developed “standards dedicated to optimize preclinical therapeutic development for MG” according to an editorial by Linda Kusner, PhD and Henry J. Kaminski, MD, both of the George Washington University. Among the principles emphasized was the need for extreme rigor in managing the details of experiments and results. The workshop and the special journal issue set the ground rules for pre-clinical research in MG. To see the editorial go to:
. To see a list of articles go to
MGFA recently announced that the foundation awarded a grant to Jeffrey T. Guptill, MD, MA, MHS, Assistant Professor, Department of Neurology, Duke University. The grant allows Dr. Guptill and his team to use innovative immunologic techniques to identify biomarkers in patients with MG that will improve diagnosis and predict therapeutic responses. As part of the grant, Dr. Guptill also will create a multi-center research network of MG centers to develop a repository of MG blood samples for use in future studies. For further information go to
News from the Public Sector
On September 28 the U.S. House of Representatives passed HR209, the
Ensuring Access to Clinical Trials Act of 2015
and it was sent to President Obama for his signature. The act, which was first enacted in 2009 and set to expire on October 1, 2015. HR209 makes permanent a provision to allow individuals to participate in rare disease clinical trials and receive up to $2,000 in compensation without the funds being counted against their income eligibility for Medicaid and Supplemental Security Income (SSI). As a result, the act removes income-based barriers to participation in clinical trials, a step especially significant for clinical trials directed toward rare diseases. The legislation was adopted by the Senate in July as S139. For details go to
U.S. Department of Health and Human Services (HHS)
Food and Drug Administration (FDA)
The FDA approved Impax Laboratories generic Mestinon Timespan Tablets 180 for treatment of MG. To view the Impax press release dated September 17, go to
Rare Disease Research Grants
On September 22 the FDA announced the awarding of research grants totaling $19 million for the development of treatments for 18 rare diseases. The grants are part of the FDA's Orphan Products Grant Program. For details and a list of grant recipients go to
The site provides answers to 10 frequently asked questions. The questions and answers
address Social Security, Medicare, transportation, financial assistance, service dogs, help for caregivers, housing, financial aid for students with disabilities, and job training. Go to:
10 Questions Visitors Asked Disability.gov
Office of Emergency Preparedness
National Preparedness Month
September was National Preparedness Month, during which people were encouraged to prepare themselves and their families for unexpected emergencies such as floods, wildfires, hurricanes, and others. The advice that HHS provided was directed toward being informed, having a plan, creating a disaster kit, etc. and it can be utilized year round. HHS reminded people throughout the country to take the first steps toward being prepared citing the motto “Don’t wait. Communicate. Make your emergency plan today.” For details go to
and for free mobile apps, the
National Library of Medicine
Accelerating New Antibiotic Development
On September 16 HHS announced a strategic alliance to accelerate new antibiotic development. The department's press release stated, “Multiple drugs to combat bioterrorism threats and other life-threatening bacterial infections will be developed under a public-private partnership agreement between the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Preparedness and Response (
) and Astra Zeneca, a global biopharmaceutical company.” For details go to
Influenza Antiviral Drug Development
On September 28 HHS announced the development of an experimental influenza antiviral drug for use in treating patients hospitalized with influenza. In its press release, HHS announced that the drug will receive support from HHS Office of the Assistant Secretary for Preparedness and Response (ASPR). HHS further stated that the drug “may be more potent and could have a longer treatment window than existing drugs.” To view the release, go to
Centers for Disease Control and Prevention (CDC)
The CDC recently published a new report, T
he Prevalence of Disability and Disability Type Among Adults – United States 2013
that describes the percentage of adults with disabilities in the United States living in communities. This report is based on research in 2013 that allowed respondents to identify specific functional types of disability such as mobility, cognition, vision, self-care and independent living. Researchers found that one out of every five adults has a disability, with the highest percentages generally found in southern states and the lowest mostly in mid-western and Rocky Mountain states. For details go to
Government Accountability Office (GAO)
On September 29 the GAO released its report “Electronic Health Records: Non-Federal Efforts to Help Achieve Health Information Interoperability.” Based on reviews of the efforts of 18 non federal initiatives and interviews, the GAO identified five key challenges to achieving Electronic Health Records (EHR) interoperability. These include variation in state privacy rules, costs, and insufficiencies in health data standards. For additional information, go to
White House Conference on Aging (WHCoA)
The WHCoA, held every 10 years, took place at the White House on July 13, 2015 with the participation of older Americans, community leaders and advocates. In addition to those attending in person, more than 700 “watch parties” were held in every state of the Union. For details and a video timeline, go to
2015 White House Conference on Aging
The U.S. Surgeon General, Vivek Murthy, launched a Call to Action
Step it up! Help Make Our Communities Walkable
that offers strategies for increasing walking and walkable communities for people of all ages. Describing walking as an easy way to start and maintain a physically active lifestyle, the Call to Action aims to increase walking across the nation by calling for access to safe and convenient places to walk and wheelchair roll.
The Call to Action further states that because one out of every two U.S. adults is living with a chronic disease, such as heart disease, cancer, or diabetes, increasing people’s physical activity levels will significantly reduce the risk of chronic diseases and related risk factors. Additional health benefits of physical activity make it one of the most important actions people can take to improve their overall health. For a recording of the announcement and additional information, go to
Before starting any exercise program, always consult with your physician.
Institute of Medicine (IOM)
In September the IOM issued a report
Improving Diagnosis in Health Care.
Stating that getting the right diagnosis is a key aspect of health care, the report provides an explanation of a patient's health problem and informs subsequent health care decisions. The committee concluded that attention to the significance of diagnosis, especially diagnostic errors is largely unappreciated in efforts to improve the quality and safety of health care. It further stated that this inattention results in most people experiencing at least one diagnostic error in their lifetime, sometimes with devastating consequences. For details go to
Report in Brief
National Organization for Rare Diseases (NORD)
2016 Rare Disease Day
NORD has announced the theme for the ninth annual Rare Disease Day along with its partner EURORDIS, the founder of the annual commemoration. The theme of the event to be held on February 29, 2016 is “Join us in making the voice of rare disease heard.” To view the official announcement , go to
In case you missed an E-Update, the past issues are below.
E-Update June 2015
E-Update February 2015
E-Update August 2014
E-Update May 2014
E-Update February 2014
E-Update October 2013
E-Update July 2013
E-Update April 2013
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What is MG?
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Foundation Focus Newsletter
2015- MG Walks begin March 7
for complete schedule.
Rare Disease Day 2015
February 28, 2015 will be Rare Disease Day. Rare Disease Day is produced by the National Organization for Rare Diseases, better known as NORD.
To learn more, click
Alexion Pharmaceuticals Clinical Trial. Learn more
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