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MGFA News and Announcements
Flu Season -- 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. Click on the University of Alabama December 8th news release for additional flu information http://www.uab.edu/news/youcanuse/item/7826-flu-season-and-vaccines-what-you-need-to-know
Exception/caveat: 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.
MGFA New Logos
We are excited to introduce the MGFA’s new logos and color branding for both the organization and its signature awareness and fundraising Campaign, the MG Walk. The changes in the organizational image align with how MGFA is growing and changing. As MGFA volunteers and staff expand our reach as a unified organization, representing the interests of all whose lives are affected by myasthenia gravis, we looked for an image that had its roots in the MG Community, featuring teal as one of our colors, and perhaps just a hint of a snowflake. As the world is changing, MGFA too must become a more modern and relevant organization—addressing the challenges of living with MG in today’s fast paced environment. 2017 brings new hope for those living with MG, with new knowledge and better treatments on the horizon. But there are roadblocks to overcome, including access to quality care and appropriate treatments, and so raising awareness and advocacy will become even more critical parts of our mission. And the MG Walk will continue to grow as the centerpiece of fund raising and awareness efforts. We look forward to rolling out our new branding in the weeks and months to come…
MG Patients, Support Groups in the News
Texas Student with MG Perseveres to Achieve Diploma
Mikayla Bass used to wonder if she ever would graduate from college. Ken Rodriguez of the San Antonio Rivard Report reported that she enrolled in St. Mary’s University in San Antonio, TX in the fall of 2012 on a volleyball scholarship. In January 2014, Bass was diagnosed with myasthenia gravis (MG), which made it difficult to swallow, and at times almost impossible to breathe. She received extraordinary help along the way to achieving her degree. A team of professors designed a set of online courses so that she could complete degree requirements without leaving home. Military personnel stationed nearby helped as well. When Bass needed a trainer for her service dog, she went to Adam Gibson, owner of Top Dog Professional Training. He not only trained her dog, he became so impressed with Bass’ passion for animals that he offered her an internship, which led to a job, where she trains dogs to develop a scent for insulin. After missing two semesters, she returned to school as an online student in January 2015 and finally achieved her degree. For more information,
Renowned Chef, MG Patient Featured in GQ Magazine
Charleston, South Carolina award-winning chef and creator of Husk Restaurants, McCrady’s and Minero, Sean Brock was featured in GQ Magazine in an article discussing his battle with MG and the success of his newest restaurant. After getting properly diagnosed and receiving treatment, a creative resurgence led to Sean being able to revamp his first Charleston restaurant, McCrady's. A combination of the steroid prednisone and the cholinesterase inhibitor, pyridostigmine, made Sean feel 100% better, cleared his depression and gave him the energy (and eyesight) to make the changes to his restaurant.
Read more here.
Seventh-Grade MG Patient Leads Toy Drive at Duke
Grayson Thorne and his family are once again collecting toys for children at Duke Children’s Hospital. Last year, Grayson’s Treasure Chest collected roughly $6,500 worth of toys, according to Grayson’s mom, Leigh Ann Thorne-Boyette. “We had to rent a U-Haul trailer to pull to Duke for delivery,” she said. Grayson, a seventh-grader at Springfield Middle School, was diagnosed last year with Myasthenia Gravis. While he was a patient at Duke that first summer after his diagnosis, Duke staff gave toys to the young patients as encouragement. Grayson and his family decided to help other children in similar circumstances and started the toy drive last year. The family will be collecting toys through the end of December and will deliver them when they go to Duke in January for Grayson’s appointment.
Read more here.
Low Country SC Myasthenia Gravis Support Group hosts Dr. William Moran
Dr. William Moran, Director of the Division of General Internal Medicine and Geriatrics at the Medical University of South Carolina (MUSC) was the featured speaker at the Low Country SC Myasthenia Gravis Support Group meeting in November. His presentation focused on medication management and related challenges faced by those with multiple chronic illness. Dr. Moran’s years of specialization in preventive care in aging and chronic illness management provided invaluable insight to problems that are frequently experienced by people who have autoimmune neurological disorders. The support group includes people who have MG, family members, and caregivers who meet at East Cooper Medical Center in Mount Pleasant from 10:30am – 12:30pm on the 3rd Saturday of each month.
Read more here
Arkansas Walk Previewed in Local Newspaper
The Dec. 3 MG Walk in Arkansas was featured in The Courier Online, an Arkansas local newspaper. The Walk was held at Lake Dardanelle State Park. The MGFA honored Vickie Henderson as the Arkansas Local Walk Hero. Henderson's MG diagnosis cut her career short as an OB GYN at Millard-Henry Clinic. "It's certainly not how I thought I would retire," Henderson said in a 2014 interview for The Courier. Read more
Wisconsin Support Group Featured in Local Newspaper
For people with a rare illness or disease, it can be hard to find others with similar experiences to talk with and relate to. Myasthenia Gravis is one of those rare diseases. Fortunately for the people of Janesville and the surrounding areas, there is a support group available for people who have MG. The goal of the group is to help manage the disease and provide support for those affected by it as well as friends and family. The group meets on the fourth Wednesday of each month, at My Apartment Pub and Grill, 15 N. Arch St., Janesville. “If we get enough people, it would be great to help people know what to expect of the disease,” said Joseph Ryder, a support group member.
Read more here
WFLA Florida TV Station Features “Get to Know Whitney Miller”
Inspired by the hospitality of her 97-year-old great-grandmother and creativity of her mother, Whitney Miller’s passion for the art of cooking began at an early age. At 22, she won the show “MasterChef,” gaining the title of Fox’s 1st U. S. MasterChef. Soon afterward, Whitney obtained her degree, with an emphasis in nutrition, from The University of Southern Mississippi. She has since become a nationally recognized master chef and speaker who donates her award-winning cooking skills to raise money for nonprofit organizations, including the Myasthenia Gravis Foundation of America to honor her father who has MG. Regularly participating in volunteer work, Whitney has donated her services to nonprofit organizations/events such as the American Heart Association, the United Way Alternative Spring Break, and the 2012, 2013, 2014, and 2015 Tebow Foundation Celebrity Golf Tournament. In 2015, she donated her cooking services to be auctioned for the Redlands Christian Migrant Association fundraising event by Wish Farms.
Read more here
Denver Middle School Teacher, MG Patient Discusses High Cost of Prescription Drugs
Kristina Voskes, a Denver middle school teacher, first noticed a problem with her eyesight four years ago. She found herself unable to track students in her room quickly. The diagnosis of Myasthenia Gravis (MG) came shortly thereafter, and she takes Mestinon to treat MG. As reported in Tenga Media’s investigation, she's gone from paying $290 for a month's supply to $850 over the last two years, with insurance. Doctors told her she needed to take Mestinon whenever she felt some of the symptoms worsen. “I would say I use it 10 to 15 times a month just to make sure my symptoms are managed.” Using the National Average Drug Acquisition Cost – or NADAC – database maintained by the Centers for Medicare and Medicaid Services, Tegna Media's investigation found the price of Mestinon that Voskes takes has increased by 419 percent since 2012. “This is a non-negotiable in my life. This is something that I need to maintain my health,” she said. “It’s astounding that it’s gotten to this point.”
Read more here
MGFA’s Advocacy Committee is working to address the issue of affordable access to MG treatments and therapies. Like Kristina many others in the MG Community are seeing rising costs, increased co-pays, and denials for therapies used off label. Please let us know of your experiences that may help us in advocacy efforts via email to:
NORTH CAROLINA SUPPORT GROUP FEATURED IN NEUROLOGY NOW
The November/December issue of Neurology Now focused on the value of support groups for people with chronic illnesses, and included this reference to an MGFA group:
Community-based support groups are usually run by a lay or professional meeting leader and are designed for conversations among patients and/or caregivers. Several years ago, Michael Cartwright, MD, a neurologist who specializes in neuromuscular disorders at Wake-Forest Baptist Hospital in Winston-Salem, NC, helped start a support group with Vicki Ruddy, one of his patients. The group is for people with myasthenia gravis, a rare neuromuscular disease that causes muscle weakness. Now he and other specialists make presentations to the group, which sometimes numbers 20 guests and includes people of all ages, ethnicities, genders, and duration and severity of disease. Over the years, friendships have formed, says Ruddy.
“Patients have a different perspective than physicians,” says Dr. Cartwright. “It's good for other patients, especially those just diagnosed, to hear from those who've been through testing and treatment.”
To read the full article,
2017 MG Walk Campaign Launches
Following a busy, yet extremely exciting and successful 2016 MG Walk Campaign, we are thrilled to announce that registration is now open for many of the 2017 spring MG Walks! Below you will find the direct link for these MG Walks. Please visit www.MGWalk.org for the additional MG Walks that will continue to open in the coming days and weeks for the spring and fall season.
Tampa Bay: March 11
South Florida: March 12
South Carolina: April 8
Georgia: March 11
New Orleans: March 25
Northern Wisconsin: May 6
Tallahassee: March 12
North Carolina: April 8
Southern Wisconsin: May 6
For those who have never participated in an MG Walk and/or are new to the MG community, we strongly encourage you learn more about how to serve as a Team Captain and/or active fundraiser in 2017! To learn how easy it is to Get Started and why your MG Walk experience will be so rewarding and fun, please contact the MG Walk office at1-855-MGWALKS (649-2557) or email
. Please also contact us if you are interested in bringing a new MG Walk to your market!
The MG Walk team looks forward to taking the “first steps” with all those interested in the becoming involved with the vital MG Walk Campaign. These steps will surely bring us closer to the ultimate finish line...a world without myasthenia gravis!
Many thanks for your anticipated interest in helping to maximize the awareness and overall success of the 2017 MG Walk Campaign!
Research and Medical Industry News
Rare Disease Report, New England Journal of Medicine Feature “MG and the Ice Pack Test”
In the New England Journal of Medicine, Lui and Chen report on using an ice pack to diagnose myasthenia gravis. The case involved a 68-year-old man presented with ptosis of the left eye and no other symptoms. Myasthenia gravis was suspected and the doctors did the ice-pack test by applying it to the left eye for 2 minutes at which time the ptosis was substantially diminished (>5 mm). The inhibition of acetylcholinesterase activity at a reduced muscle temperature is thought to underlie the observed clinical improvement. In other words, the ice pack acts like an AChE inhibitor. The diagnosis was confirmed by the presence of serum anti-acetylcholine receptor antibodies and by electro-diagnostic testing. The patient was successfully treated with the AChE inhibitor pyridostigmine.
Read more here
Catalyst Pharmaceuticals Update on Clinical trial for Patients with Congenital Myasthenic Syndromes
On December 8 Catalyst Pharmaceuticals, Inc. provided an update on its clinical trial with amifampridine phosphate in patients with congenital myasthenic syndromes (CMS). After discussions with the U.S. Food and Drug Administration (FDA) the study has been expanded beyond pediatric patients to include adult CMS patients and the enrollment size has been increased to approximately 20 patients. Five sites are participating in the study: Children's Healthcare of Atlanta; Johns Hopkins Pediatric Neurology; Boston Children's Hospital; Nationwide Children's Hospital; and University of California, Los Angeles, Department of Neurology.
Click to view the Catalyst press release
Nutra Pharma Develops Experimental Therapy for MS
RPI-78M is an experimental therapy under development by Nutra Pharma to treat multiple sclerosis (MS). It is derived from an extract of cobra venom and is an antagonist of the nicotinic acetylcholine receptor. Nicotinic acetylcholine receptors are found in the central nervous system, the peripheral nervous systems, and skeletal muscles. RPI-78M contains anticholinergic peptides that recognize the same receptors as nicotine but have the opposite effect. Studies have demonstrated that native and modified neurotoxins can protect nerve cells from early cell death. The drug may be beneficial for patients with neuromuscular disorders that include multiple sclerosis, myasthenia gravis, muscular dystrophy, and amyotrophic lateral sclerosis when activity of these receptors has been compromised. RPI-78M was granted Orphan Drug Designation from the U.S. Food and Drug Administration (FDA) to treat pediatric multiple sclerosis.
Read more here
Research Shows Patients Ineligible for Studies May Benefit from Trial Participation
Patients who potentially could benefit most from participation in clinical trials due to poor prognoses often are not included based on eligibility criteria, such as existing medical illnesses. A novel study at The University of Texas MD Anderson Cancer Center revealed some patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS), who traditionally could not be considered for clinical trials, responded well and were safely treated in this setting. The study, led by Guillermo Garcia-Manero, M.D., professor of Leukemia, followed 109 patients with AML and MDS undergoing treatment with azacitidine (AZA) and vorinostat. Research results were presented Dec. 3 at the annual meeting of the American Society for Hematology. “Participation in clinical trials is fundamental for the development of new therapeutic interventions,” said Guillermo Montalban-Bravo, M.D., fellow in Leukemia, a research team member. “Despite this need, only three to five percent of patients with cancer treated in the U.S. currently are enrolled in clinical trials.”
Read more here
Glutamate Plays Previously Unknown Role in Neuromuscular Development
For decades, scientists thought acetylcholine was the only neurotransmitter responsible for controlling how muscles and nerves are wired together during development. Turns out, they were wrong. Glutamate, the most common neurotransmitter in the brain, is also necessary according to University at Buffalo and Johns Hopkins University researchers who reported their findings in the Journal of Neuroscience. The team took a new approach to the old question of how the connections from the spinal cord to the muscles mature, said Kirkwood Personius, PT, PhD, the paper’s lead author and a clinical associate professor of rehabilitation science in UB’s School of Public Health and Health Professions. “However, we now have shown that an important transmitter is one that nobody had previously expected: it is glutamate. “The nerves release a molecule that is converted into glutamate, and the glutamate then activates glutamate receptors, notably NMDA receptors, on the muscle.”
Read more here
Durability of Rituximab Response in Myasthenia Gravis
The November 21st JAMA Network reported on a review of population based epidemiological studies in myasthenia gravis. Researchers led by Kimberly R. Robeson, MD, of the Yale School of Medicine, along with others from the Hospital of Special Surgery in New York sought to determine if the rituximab response in treatment-refractory acetylcholine receptor autoantibody–positive myasthenia gravis (AChR+ MG) is durable. In this case series study of 16 patients with AChR+ MG who were treated with rituximab and followed up for 18 to 84 months, all patients were observed to have clinical improvement. Nine patients had a relapse within a mean of 36 months after the last treatment cycle; the remaining 7 continued to maintain clinical benefit during a mean follow-up of 47 months. The review showed that rituximab appears to be an effective option with sustained long-term benefit after treatment in patients with refractory AChR+ MG.
Click for more information
Caring for the “Invisible Homebound”: The Importance of Quality Measures
Writing in the October 27th Commonwealth Fund blog, “To the Point,” Christine Ritchie, M.D., of the University of California San Francisco and Bruce Leff, M.D., of Johns Hopkins University, discuss the need for a set of quality metrics to measure home-based health care. An estimated 1.9 million U.S. adults age 65 or older are completely or mostly homebound, while another 5.3 million have functional limitations that make it difficult to access office-based primary care, and some are unable to do so altogether. Many of these individuals struggle to manage their illnesses and depend on overwhelmed family caregivers. Ritchie and Leff suggest that to improve care for homebound patients and lower costs for the health system at large, a set of quality metrics for people receiving care at home is needed. One challenge to monitoring the quality of homebound patients’ experiences, however, is that many homebound people are invisible to health care providers. For further information go to Caring for the “Invisible Homebound”: The Importance of Quality Measures.
Health of the States Project
The Urban Institute, in partnership with the Center on Society and Health at Virginia Commonwealth University released “Health of the States,” a series of reports on a project that examined a wide range of factors that shape health. The reports are based on detailed analyses of state rankings on 39 health outcomes and correlations between those health outcomes and 123 determinants of health that span five domains: health care, health behaviors, social and economic factors, the physical and social environment, and public policies and spending.
For details Read the Health of the States report.
News from the Public Sector
The White House: President Obama Signs 21st Century Cures Act into Law
On December 13, 2016 President Obama signed into law H.R. 34, the 21st Century Cures Act, (“Cures”). Introduced in Congress two years ago, Cures passed through Congress with strong bipartisan support. The House of Representatives approved the bill on November 30, 2016 by a vote of 392-26, and on December 7, 2016, the Senate passed the bill by a vote of 94 to 5.
MGFA joined with Research America, an Alliance for Discoveries in Health, to support and encourage enactment of Cures legislation. The bill that the President signed includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients. Cures modifies current medical research, drug development and delivery processes; reauthorizes the National Institutes of Health and a number of other Health and Human Services programs and activities, including the cancer "moonshot" initiative; provides additional funds to the FDA; funds state efforts to prevent and treat opioid abuse; makes changes to health and justice authorities with respect to mental health and substance use disorders; incorporates the patient perspective into regulatory development; and makes a variety of updates with respect to Medicare, Medicaid, and health information technology. The legislation includes policy provisions that will strengthen the biomedical innovation system and empower the nation’s emerging scientists and researchers.
Executive Order to Enhance Protections for Air Travelers
On October 19, President Obama signed an Executive Order to spur competition in the airline industry and give consumers the information they need to make informed choices. Following the President’s announcement, the Department of Transportation (DOT) announced enhanced protections for air travelers and actions to promote airline competition. These actions and a final rule include new protections for air travelers with disabilities. As of January 1, 2018, the largest U.S. airlines will be required to report on the number of mishandled wheelchairs and scooters that are enplaned in the aircraft cargo so that air travelers with disabilities can easily compare carriers and make informed travel decisions. To view the regulation, go to
. To read the White House press release,
Health and Human Services (HHS)
National Institutes of Health (NIH)
In observance of November as National Family Caregivers Month, the National Institute on Aging (NIA) provided information on resources for the more than 15 million caregivers in the U.S. who provide unpaid care for an older family member, friend, or neighbor. The NIA suggested taking the time to thank these often-unsung heroes and show appreciation by offering help such as giving the caregiver a break, setting up a time to exercise together, volunteering to do chores like meal preparation or laundry. These suggestions, including advising that caregivers spend time with friends or participate in activities they enjoy and utilize NIA resources, apply to all 12 months of the year. For resources, go to Practical information on caregiving; Long-distance caregiving Q&As; and Alzheimer’s caregiving tips.
Food and Drug Administration (FDA)
On December 13, the FDA issued a news release about the 21st Century Cures Act that President Obama signed into law. The FDA states that it builds on FDA's ongoing efforts to advance medical product innovation and ensure that patients get access to treatments as quickly as possible, with continued assurance from high quality evidence that they are safe and effective. To view the U.S. Food and Drug Administration (FDA) statement, go to:
Centers for Disease Control and Prevention (CDC)
The 500 Cities Project, a collaboration between CDC, the Robert Wood Johnson Foundation, and the CDC Foundation was undertaken to provide city- and census tract-level small area estimates for chronic disease risk factors, health outcomes, and clinical preventive service use for the largest 500 cities in the United States. These small area estimates allow cities and local health departments to better understand the burden and geographic distribution of health-related variables in their jurisdictions, and help them plan public health interventions. For details, go to More about the 500 Cities Project
National Academies of Sciences, Engineering and Medicine (NASEM)
The NASEM convened an expert committee to examine what is known about the nation’s family caregivers of older adults and to recommend policies to address their needs and help to minimize the barriers they encounter in acting on behalf of an older adult. At least 17.7 million individuals in the United States are providing care and support to an older parent, spouse, friend, or neighbor who needs help because of a limitation in their physical, mental, or cognitive functioning. The committee’s report, “Families Caring for an Aging America” raises serious concerns about the current state of family caregiving of older adults in the U.S. and advises that the impact of caregiving on families should not be ignored.
Read more here
The House of Representatives and the Senate passed the 21st Century Cures Act (Cures) and the resulting bill H.R. 34 was signed into law by President Obama on December 13. Introduced in Congress two years ago, Cures passed through Congress with strong bipartisan support. The House of Representatives approved the bill on November 30, 2016 by a vote of 392-26, and on December 7, 2016, the Senate passed the bill by a vote of 94 to 5. Among the many provisions in Cures is key funding to the National Institutes of Health (NIH) and the Federal Food and Drug Administration (FDA) with incentives to bring new treatments to patients.
National Organization for Rare Diseases (NORD)
A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released by the National Organization for Rare Disorders Rare Action Network (NORD RAN). The report, “State Report Card: A Roadmap to Improve the Lives of People with Rare Diseases,” indicates that progress in several areas of health policy is slow.
“The statistics on rare diseases demand our attention as a public health issue. There are 7,000 rare diseases that combined affect 30 million Americans, or 1 in 10 people,” said Peter L. Saltonstall, president and CEO of NORD. “State lawmakers play an important role in determining individual access to health care and the NORD RAN State Report Card indicates that states’ laws are failing their constituents.” For more information, go to NORD’s website at:
National Health Council (NHC)
The National Health Council is the only organization of its kind that brings together all segments of the health care community to provide a united voice for 133 million people with chronic diseases and disabilities and their family caregivers. Made up of 115 national health-related organizations, including the Myasthenia Gravis Foundation of America (MGFA), its core membership includes 50 of the nation’s leading patient advocacy groups. The NHC has developed Five Health Care Principles for Putting Patients First, entitled “The Touchstones for Health Care that Work for All.” MGFA supports these touchstones which are:
1. Cover Everyone
2. Curb Care Responsibly
3. Abolish Exclusions of Pre-Existing Conditions
4. Eliminate Lifetime Caps
5. Ensure Access to Long-Term and End-of-Life Care
Please Support MGFA With Your Contribution Today
This communication and all the information that MGFA provides are dependent on donations from people like you who care about those with myasthenia gravis. You can help to ensure that MGFA is able to continue to bring you relevant news, fund research, and support people living with the disease through programs and services. Please click on the link below to make a contribution to help MGFA continue to support the MG Community!
To make your donation to MGFA click the link below
If you or someone you know is experiencing sudden or gradually increasing symptoms of muscle weakness, it could be a sign of MG or another serious condition.
Talk to you doctor if you are short of breath, have difficulty smiling, talking or swallowing, or cannot walk any distance without having to rest.
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