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Foundation Focus Newsletter
E-Update Summer 2014 Edition
The MGFA issued a request for proposals to support pilot studies
that are highly focused and innovative with a clear plan that will lead to new federal, pharmaceutical, or private foundation supported investigations. In April 2014 the MGFA Board of Directors approved two grants of $50,000 each to Jeffrey Guptill, MD, MA, MHS, and Assistant Professor in the Department of Neurology at Duke University and to Linda Kusner, PhD, Assistant Professor of Pharmacology and Physiology at The George Washington University.
The purpose of Dr. Guptill’s project is to perform advance immunologic studies to determine B10 cell frequencies in several MG patient populations. B10 cells are known to play a substantial role in suppressing T cell autoimmunity, thus making MG a T cell dependent disorder. Overall, this proposal will significantly advance understanding of immunoregulatory mechanisms in MG and potentially identify B10 cells as a therapeutic target in MG.
The goal of Dr. Kusner’s research project titled
Anti-apoptotic Mechanisms in Persistence of Autoimmune Myasthenia Gravis
is to determine the mechanisms that maintain the persistence of auto-reactive cells that produce myasthenia gravis. She has performed preliminary studies which demonstrate survivin-positive B lymphocytes and plasma cells are present at significant levels in the circulation of humans with MG. In addition, survivin co-localizes to cells in the thymus and circulating white blood cells that produce antibodies which bind specifically to acetylcholine receptor alpha subunit epitopes, indicating a strong association between survivin expression and the autoimmune state in patients with MG. Dr. Kusner’s additional finding
that a pathogenic connection exists between autoimmune disorders and cancer was reported on July 22 in
an international online publication that reports on primary research.
For more information on the finding click on
New research finds pathogenic connection between autoimmune disorders and cancer
In Memoriam: Alfred Jaretzki III, MD
Alfred Jaretzki III, Professor Emeritus of Clinical Surgery at Columbia Presbyterian Medical Center in New York City died at age 94 on May 29, 2014. He was a valuable member of Myasthenia Gravis Foundation of America’s Medical/Scientific Advisory Board. More information is available at MGFA’s website
The 2014 MG Walk Campaign is at the halfway mark and off to a terrific start with 11 events completed and more than $500,000 already raised this year. We are well on the way to reach and hopefully surpass this year's goal of $800,000. We also are excited to announce the launch of the new MG Walk website. Please visit
to experience the new website elements as well as review the list of 18 locations that will be hosting an MG Walk this Fall. We hope many of you will register for an MG Walk near you and begin to fundraise today.
If there is no MG Walk scheduled near your hometown, consider taking a road trip or participating in a "Virtual MG Walk" anytime, anywhere. The MG Walk Office is always looking for new cities for expansion. If you are interested in helping to bring the MG Walk to your backyard, please contact the MG Walk Office today.
Don't forget about the MG Walk's Grand Raffle for 2014, which will award one MG Walker and a friend an unforgettable trip to the 2015 Grammy Awards. All 2014 MG Walk registrants (including MG Walks held this spring) will receive one entry into the raffle for every $1,000 they raise. The winner will have the thrilling opportunity to attend the Grammys on February 8, 2015 to see live performances from the year's hottest acts and watch music history being made. This "once in a lifetime" package includes:
Two tickets to the 2015 Grammys
Round trip airfare for 2
Hotel accommodations for 2 nights
Red carpet viewing
Two tickets to the post-Grammys party.
If you have any questions or need more information, please call 855-MGWalks (855-649-2557) or email
Follow the MG Walk Campaign at Facebook.com/MGWalks; Twitter.com/MG_Walk; and Pinterest.com/MGWalk.
Thanks to everyone who has helped the MG Walk over the last 3 ½ years to take tremendous strides toward the ultimate "Finish Line" -- a world without myasthenia gravis.
Special Donation Made to MGFA
Two young Tennessee sisters, Camy and Claire Stout, recently won the national footwear retailer Rack Room Shoes’ “10
Anniversary Models Wanted” contest. The $5,000 prize money was intended for the charity of the winner’s choice. The sisters generously selected the MGFA as recipient of their prize
in honor of their family friend, Shelley Holt, who has MG.
As winners, the Stouts are now featured in the national footwear retailer’s
Back to School
advertising campaign. They are also currently featured on the Rack Room Shoes’ website, advertising inserts and display signage in more than 385 retail stores nationwide. The MGFA is grateful for their generosity and will feature more information about the sisters and their choice of charity in upcoming news items on
, emails and other publications.
U.S. Department of Health and Human Services (HHS)
In mid-June HHS announced that the United States reached a milestone in battling influenza with its first approval to manufacture seasonal influenza vaccine using cell-based technology in a U.S. facility. The facility, owned by Novartis of Basel, Switzerland, and located in Holly Springs, N.C., now can manufacture cell-based vaccine against seasonal as well as pandemic influenza viruses. In announcing the news, Robin Robinson, PhD HHS Biomedical Advanced Research and Development Authority (BARDA) Director and Deputy Assistant Secretary for Preparedness and Response (ASPR) stated that this new capability demonstrates the effectiveness of a multi-use approach to emergency preparedness
To view the announcement, click on
A milestone in protection from influenza
Food and Drug Administration (FDA)
The FDA provides various guidelines for consumers, including guidance for disposing of unused medications. For details on this subject and to sign up for future FDA notices, go to:
Food Safety in Summer
The FDA advises the public to practice food safety when handling produce by following these cleaning steps along the way:
7 Tips for Cleaning Fruits & Vegetables
National Hurricane Preparedness Week was observed in May. The tips for preparing for hurricanes and protecting our families and communities are timely throughout hurricane season. For example, tips include: “As with any emergency situation, food, water and medical supplies will become harder to find in the days before an expected storm. Keeping emergency supplies of food and water stored in the home is the best way to be prepared for hurricanes and flooding.” For details go to
Hurricane Season: Be Prepared
Orphan Drug Designation Granted to Soliris (
eculizumab) for Treating MG
and the European Commission have
granted an orphan drug designation to Soliris® (eculizumab) for the treatment of patients with MG. Soliris currently is approved for the treatment of paroxysmal nocturnal hemoglobinuria (PNH) and atypical hemolytic uremic syndrome (aHUS), both of which are caused by chronic uncontrolled complement activation. Orphan drug status may be granted to drugs and biologic products that are intended for the safe and effective treatment, diagnosis, or prevention of rare diseases or disorders that affect fewer than 200,000 people in the U.S. Designating a drug as “orphan” provides a drug developer with certain benefits and incentives, and potentially a period of marketing exclusivity. More information is available at
Centers for Disease Control and Prevention (CDC):
- The CDC has awarded more than $840 million to continue improving emergency preparedness of state and local public health and health care systems. According to Nicole Lurie, M.D., Assistant Secretary for Preparedness and Response (ASPR), “Community and state preparedness is essential to the health security of all Americans. Events in the last few years have demonstrated how critical it is for health systems across the country to be ready and able to respond quickly and effectively.”
To view the
July 1 CDC announcement click here
Learn more here
Centers for Medicare & Medicaid Services (CMS)
Prior Authorization Demonstration Proposal
- The CMS recently announced plans to expand a demonstration for prior authorization of power mobility devices; test prior authorization in additional services in two new demonstration programs; and propose a regulation for prior authorization of certain durable medical equipment, prosthetics, orthotics, and supplies. Information is available at:
In preparation for the 25
anniversary of the Americans with Disabilities Act (ADA), enacted in 1990, the U.S. Census Bureau released its collection of the most recent data pertaining to Americans with disabilities, including the statement that approximately
Americans have a disability. Additional information and data may be viewed at
10 Things You May Not Know about the ADA
U.S. Department of Justice (DoJ)
Proposed Amendment to Americans with Disabilities Act Regulations
On July 25
the Justice Department announced the issuance of a Notice of Proposed Rulemaking (NPRM) to amend the Title III of the Americans with Disabilities Act (ADA) regulation in order to give persons with hearing and vision disabilities access to movies. The regulation would require movie that theaters provide closed movie captioning and audio description. In signing the order, Attorney General Eric Holder stated, "Twenty-four years after its passage, the Americans with Disabilities Act remains a critical tool for extending the promise of opportunity and inclusion for everyone in this country." For more details including a link to the NPRM, go to
Justice Department Proposes New Rule to Expand Access to Movie Theaters for People with Hearing & Vision Disabilities
American Association on Health and Disability (AAHD)
The AAHD is accepting applications for the Frederick J .Krause Scholarship on Health and Disability for 2014/2015. The scholarship is awarded to a student with a
disability who is pursuing undergraduate/graduate studies related to health and disability in an accredited university. The mission of the AAHD is to contribute to national, state, and local efforts to promote health and wellness in people with disabilities and identify effective intervention strategies that reduce health disparities between people with disabilities and the general population. Applications are due November 15, 2014. For details go to
MG National Assembly in Beijing
The first session of the National Assembly on Myasthenia Gravis Patients was held at the National Stadium in Beijing on June 15. Patients, their families, scholars and medical staff from China's mainland and Taiwan attended the Assembly. For details go to
National Assembly on
Patients Held in Beijing
In case you missed an E-Update, the past issues are below.
E-Update May 2014
E-Update February 2014
E-Update October 2013
E-Update July 2013
E-Update April 2013
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