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Foundation Focus Newsletter
E-Update Spring 2015 Edition
June is MG Awareness Month
MGFA designates every June as “MG Awareness Month,” a call to action to patients, the medical community and advocates to come together to increase awareness of MG. MGFA volunteers throughout the country use a variety of advocacy tools to spread the word about MG and emphasize the need for further research to define MG more clearly, expand treatments, and find a cure.
There's still time to get involved in 2015 awareness generating activities. Click on
to access the 2015 June awareness poster. Below are some ideas you can pursue. Remember, every little bit helps, and these tools can be used throughout the year.
Tell your story on social media – Facebook, Pinterest, Instagram, and Twitter.
hare your personal story on such a site and encourage others to do the same.
Visit MGFA’s new Twitter site or Facebook site to post your photo or story.
Join the crowd on Twitter posting “I have heard of MG” photos. Go to Twitter.com #IhaveheardofMG. Share the link with friends and family. Thank Florida MG Walk volunteer Sandra Hardin who started this trend!
Keep MG Awareness in Your Plans for the weeks and months ahead.
Promote a human interest story.
Do you know an MG patient who has triumphed against adversity? Interview that person, write up their story. Promote the story to community press, and/or post it on the web.
Make a plan to work with your schools next school year.
For instance, approach a science teacher or athletics coach at a local high school, to produce an event focused on MG. With the science teacher suggest a class project around the science of MG. Students could research MG then participate in a quiz show event, perhaps in the school auditorium, where family and MG patients could attend. Local retailers could be approached for prizes. Or, pursue an event with an athletic focus.
Speak before local clubs or church groups
. Identify local clubs (Kiwanis, Elks, etc.) and groups that might be interested in a program about MG. Pick a few members who can speak to an average person about MG. If members are concerned about public speaking, another approach might be to have two members, one the interviewer, the other the interviewee. Or, work with a local doctor and pair up a physician with a patient to talk about MG.
Plan to join an MG Walk in your area
– check out the
Make a difference for your MG Community:
Hug Your Caregivers, Family and Friends
and remind them that they are special for taking care of you and supporting you through the many trials and tribulations of living with MG.
Make/Ask for a Donation –
Donations can be made at the MGFA web site at
or through the MG Walk web site at
. Both vehicles help to raise MG awareness and funds for research to find a cure.
Make someone’s day -- encourage Fellow MG Patients –
Make a call, send a card, give a hug. Recognize the achievements, the courage, and the love, with a compliment.
Wear your MG T- Shirt!
2015 National Conference
In San Diego it was 80 degrees and sunny, but 175 people weren't soaking in the rays. It was April 29 – May 1, 2015 and they had come to sunny southern California to learn, share, and meet their fellows in the MG community at the MGFA’s Annual Conference. Informative educational sessions were varied and included topics such as “
Your Introduction to Myasthenia Gravis”
Michael Hehir, MD
from The University of Vermont; and “
Social Security & Insurance Issues”
with moderator Sue Klinger, MG Patient, Retired Senior Vice President of Human Resources, Citibank, MGFA Board of Directors, and New York City Support Group Facilitator;
, LCSW, National Association of Social Workers,
Burke A. Christensen
, JD, CLU, Professor of Insurance, Eastern Kentucky University,
Insurance Expert Network, LLC and
Social Security Public Affairs Specialist.
Nearly 66% of the conference attendees were MG patients while the remainder were MG caregivers and friends, MGFA Medical and Scientific Advisory Board members as well as MGFA Nurses Advisory Board members and volunteer speakers who gave their time and resources to make this a successful conference. Conference evaluation responders told how they chose to attend the program, and one said, “I expected to learn a lot and also enjoy talking with people. I did both.”
Most sessions received ratings of 4 or better on a ranking scale of 1 to 5, with 5 being the top score. As one responder said, “Excellence is what I come to expect and I wasn’t disappointed” while another reported, “I had a great time, met others with MG, and learned new and interesting information.”
We asked participants for their evaluations and ideas for the next year's conference. We received suggestions such as
how does MG affect your mental and emotional health
rehabilitation/occupational therapy for those with MG; understanding drug development and the impact of medications on one another; and other possible treatments.
We welcome your ideas for a conference topic and/or speaker. Please email your suggestions to
. We hope to see YOU at the 2016 conference! Look for details on the MGFA Website coming soon.
Check out photos and comments on
. Videos from the conference presentations will be available at
MGFA offered two Webinars in May that will be posted soon at
On May 12 MGFA offered a Webinar on
The Role of Exercise in Taking Control of Your MG
presented by Charlene Hafer-Macko, M.D.,
clinician and researcher at the University of Maryland School of Medicine, Department of Neurology and the Baltimore Veterans Administration Medical Center whose research focuses on disability-adjusted exercise programs to promote health and wellness for individuals with myasthenia gravis (MG). Dr. Hafer-Macko is a member of MGFA's Medical / Scientific Advisory Board and Board of Directors.
The webinar was designed to answer these questions: How do I make exercise a part of my life while living with MG? How can I retain or regain my physical strength? Will MG will sideline me when it comes to being active? What are the health benefits of exercise, and how can I achieve them while coping with MG?
The second Webinar,
, was presented on May 21
by Donald B. Sanders, MD, Professor of Medicine, Duke University Medical Center, Past Chairman of the MGFA Medical/Scientific Advisory Board. The Webinar offered an in depth discussion of Ocular MG and addressed these questions: What is ocular MG? How is it defined? What are the treatments? Look for this program to be posted later this summer.
The 2015 MG Walk Campaign is celebrating its fifth year, and it continues to work towards the ultimate finish line… a world without myasthenia gravis
Hoping to build on the record-breaking results of 2014, this year’s MG Walk Campaign has already promoted 11 successful MG Walks with more than 20 to go. That's ahead of last year’s pace with more than $428,295 raised
Whether you have walked every year, or this will be your first year, there is no better time to register than right now. Visit
to find your closest MG Walk, register and begin fundraising. If there is not an MG Walk in your backyard, become a virtual walker.
If you have any questions, need help registering or would like more information, please contact the MG Walk office at 1-855-MGWalks(649-2557) or
. Also please follow the MG Walk Campaign at
For those that have already walked and raised vital funds…thank you! To the rest of the MG community, we look forward to seeing you at an upcoming MG Walk in 2015!
Results from Phase II Trial of Tiriasemtiv in Patients with Myasthenia Gravis
Cytokinetics, Incorporated announced the publication of a manuscript that summarizes results from a Phase IIa “Evidence of Effect” or hypothesis-generating clinical trial which evaluated
in patients with generalized myasthenia gravis (MG). In a statement released on March 25
Cytokinetics stated, “
is the lead drug candidate from Cytokinetics' skeletal muscle contractility program and is being developed as a potential treatment for amyotrophic lateral sclerosis (ALS).” For further information, click on
Ongoing Clinical Trials for Patients with Generalized Myasthenia Gravis:
Two clinical trials are exploring new treatment options for patients with generalized myasthenia gravis.
Phase II Trial of Rituximab in Myasthenia Gravis
Supported by The National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health (NIH), the purpose of this study is to determine if Rituximab is a safe and effective drug for people with MG who are on prednisone. The study is a prospective, randomized, double-blind, placebo-controlled, study taking place at multiple centers across the U.S. It will enroll 50 people with generalized MG who must be at least 21 years of age and have a diagnosis of generalized AChR (acetylcholine receptor) antibody positive MG and meet other study criteria. For more information and a list of participating sites go to the NeuroNEXT website (http://www.neuronext.org/nn103-rituximab-mg) or click on
A Randomized, Double-Blind, Placebo-Controlled, Multi-Center Study to Evaluate the Safety and Efficacy of Eculizumab in Subjects with Refractory Generalized Myasthenia Gravis
Patients with MG who still have muscle weakness despite treatment (refractory gMG) have the opportunity to participate in the REGAIN Study of an investigational medicine for the potential treatment of refractory gMG. The REGAIN Study’s purpose is to determine if the investigational medicine, Eculizumab, is safe and effective for the treatment of refractory gMG.
Participants must be 18 years of age or older and have a diagnosis of generalized MG, and have tested positive for the acetylcholine receptor (AChR) antibody. Subjects may be eligible if they have been treated with at least 2 immunosuppressive therapies (e.g. prednisone, azathioprine, Cellcept, or cyclosporine), have been treated with at least one immunosuppressive therapy plus frequent intravenous immunoglobulin therapy (IVIg) or plasmapheresis (PE), or are experiencing severe symptoms despite current therapy. To receive more information about this study, contact the trial sponsors at
or call 1-855-687-1988, or click on
National Organization for Rare Diseases (NORD)
Rare Disease Day
MGFA viewed this event celebrated every February 28th as a chance to bring attention to MG and the challenges that we and all rare disease sufferers face. MGFA encouraged everyone who has been affected by MG to be involved and posted a list of suggested activities on the MGFA home page and Facebook page. These included using creative ways to spread the word about MG, reaching out to communities, using social media, and planning community events. For more information go to
Surveys Confirm Physician Interest in Rare Disease Information
NORD reported that recent surveys confirm a growing interest among physicians and other healthcare professionals in receiving information about rare diseases. NORD describes this finding as an important opportunity to work with
its 225 plus member organizations, which include MGFA,
and their medical advisers to enhance physician awareness of specific rare diseases as well as understanding of general patient/family challenges. For more information go to
News from the Public Sector
Century Cures Act
On May 21
the House Energy and Commerce Committee unanimously approved the nonpartisan
21st Century Cures Act
(H.R. 6 ) by a vote of 51-0. As described in a Committee statement, the legislation “will help to modernize and personalize health care, encourage greater innovation, support research, and streamline the system to deliver better, faster cures to more patients.” The Act, which includes additional funding for the National Institutes of Health and the Food and Drug Administration, touches on all aspects of medical innovation - from basic research to regulation, from biomarkers to patient data. It was spearheaded by House Energy and Commerce Committee Chairman
Fred Upton (R-MI)
and Oversight and Investigations Subcommittee Ranking Member
Diana DeGette (D-CO)
Lamar Alexander (R-TN), Chairman of the
Health, Education, Labor, and Pensions (HELP) Co
is working on a similar bill,
Innovation for Healthier Americans Act
. The Friends of Cancer Research has been monitoring the House legislation. For more information and their summary, go to
U.S. Department of Health and Human Services (HHS)
During National Hurricane Preparedness Week (May 24-30) in anticipation of the June – November hurricane season, HHS released a statement about preparing for hurricanes. Entitled “Hurricane Preparedness,” the statement contains six steps for getting started. These steps are not necessarily limited to people in hurricane prone areas as they have implications for preparing for other natural disasters. Step number 6, “Plan for your medical needs,” is particularly important for people who have MG. For details, click on
6 Ways to Stay Safe and Healthy this Hurricane Season
Centers for Medicare & Medicaid Services (CMS)
In April CMS added star ratings to its Hospital Compare website based on patients' experience of care at more than 3,500 Medicare-certified acute care hospitals. According to a CMS statement of April 16
, ratings are based on data from the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Survey measures that are included on Hospital Compare. For more information on the star ratings, click on
Choosing a Hospital Just Got Easier
To view the Compare website, go to
White House Forum on Antibiotic Stewardship Meeting
On June 3
HHS Secretary Sylvia Mathews Burwell and U.S. Department of Agriculture Secretary Tom Vilsack met with government and private sector leaders including representatives from more than 100 human and animal health organizations that are committed to improving antibiotic prescribing, implementing antibiotic stewardship programs to address the threat of antimicrobial resistance, and preventing the spread of resistant infections. In addition, President Obama signed a memorandum that “encourages the responsible use of medically important antibiotics in livestock and poultry production by creating a purchasing and acquisition preference for meat and poultry produced under responsible use policies.”
For more information, go to
White House Forum on Antibiotic Stewardship Convenes Government and Private Sector Leaders Committed to Improving Antibiotic Prescribing
White House Conference on Aging (WHCoA):
The 2015 National Conference, held every 10 years, has been scheduled for July 13 at the White House. According to Nora Super, WHCoA Executive Director, t
he event, which will be live streamed, is “part of a year-long effort to listen, learn, and share with older adults, their families, their caregivers, community leaders, and experts in the aging field on how to best address the changing landscape of aging in the coming decade.” For details go to
The WHCoA has created the
New Resource Guide: Federal Resources for Caregivers,
compilation of federal resources for caregivers from the following agencies:
Administration for Community Living (ACL)
Centers for Medicare & Medicaid Services (CMS)
Centers for Disease Control and Prevention (CDC)
Substance Abuse and Mental Health Services Administration (SAMHSA)
National Institutes of Health (NIH)
HHS Office of Women's Health (OWH)
HHS Office of Disease Prevention and Health Promotion
U.S. Department of Housing and Urban Development (HUD)
U.S. Department of Labor (DOL)
Office of Personnel Management (OPM)
Social Security Administration
U.S. Department of Veterans Affairs (VA)
Click here to view the guide
On May 14th, the WHCoA released the fourth and final policy brief in a series of briefs focused on the key themes for the Conference: Healthy Aging, Long-term Services and Supports, Elder Justice, and Retirement Security. The public is invited to review these documents and submit comments to the WHCoA.
to view the briefs and submit comments.
Government Accountability Office
On April 24
The Government Accountability Office (GAO) released a report entitled
Medicare: Potential Uses of Electronically Readable Cards for Beneficiaries and Providers,
GAO-15-319, March 25. The GAO was asked to review the ways in which electronically readable cards could be used for Medicare. The GAO found that the Centers for Medicare & Medicaid Services (CMS) could use electronically readable cards in Medicare for a number of different purposes. These include authenticating beneficiary and provider presence at the point of care, electronically exchanging beneficiary medical information, and electronically conveying beneficiary identity and insurance information to providers. To view the GAO report, go to
Institute of Medicine (IOM)
The National Academy of Sciences (NAS) members voted to change the name of the Institute of Medicine (IOM) to the National Academy of Medicine, effective July 1, 2015. The NAS explained that “the change is part of a broader internal reorganization to more effectively integrate the work of the National Academies of Sciences, Engineering, and Medicine.” The IOM will become one of the six program units operating under the direction of the integrated academies. The NAS further stated that there will not be any changes to IOM programs and activities or to the processes
for producing reports or convening meetings as a result.
In case you missed an E-Update, the past issues are below.
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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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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