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MG In the News

The latest info for the MG community is right here! 

 

Myasthenia Gravis Patient Wants Change in her Lifetime

KOLO Reno Nevada

June 20, 2022

At age 12 Rachel Blinn was diagnosed with Myasthenia Gravis. Then and now it is a rare disease with children.

She said she and her family knew something was wrong the day Rachel performed in a school play.

 

NORD Applauds House Passage of HR 7667, the Food and Drug Amendments of 2022

The US House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (HR 7667), legislation with significant implications for millions of Americans living with rare diseases. The bipartisan bill is an important step forward in reauthorizing the FDA’s medical product user fee programs, helps strengthen the accelerated approval pathway, and protects the intent of the Orphan Drug Act.

"On behalf of millions of Americans living with rare diseases, we commend House lawmakers for working in a bipartisan way to pass the critically important Food and Drug Amendments of 2022," said Heidi Ross, Vice President, Policy & Regulatory Affairs, NORD. "It is clear from this vote that our elected officials have heard our community’s calls for action, and they recognize the importance of these user fee acts in helping to address the urgent needs of their constituents who are affected by rare diseases."

READ THE FULL PRESS RELEASE ONLINE

 

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council (RDAC)

Governor Jared Polis of Colorado, signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council, making Colorado the 10th state to establish an RDAC since the start of 2021.

"Thank you to the bill sponsors, stakeholders, and everyone in the rare disease community for helping to establish a Rare Disease Advisory Council here in Colorado. This RDAC will have a positive impact in making meaningful improvements to the everyday lives of families like mine.  I’m excited about the future and optimistic we can fight rare disease together with this council," said Nick Kirchhof, NORD Colorado Rare Action Network Volunteer State Ambassador.

READ THE NEWS ABOUT THIS NEW RARE DISEASE ADVISORY COUNCIL

 

AstraZenenca/Alexion’s Ultomiris Treatment Approved in the US for Adults with Generalized Myasthenia Gravis

AstraZeneca Website

April 28, 2022

Our industry partner AstraZeneca, and its Alexion rare disease group, announced that the United States Food & Drug Administration (FDA) has officially approved the Ultomiris (ravulizumab-cwvz) treatment for adult patients with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody-positive, which represents 80% of people living with the disease. Ultomiris showed early effect and lasting improvement in activities of daily living and has potential to reduce treatment burden with dosing every 8 weeks

Samantha Masterson, President & Chief Executive Officer, Myasthenia Gravis Foundation of America (MGFA), said: “gMG takes a physical and emotional toll on those living with the disease. We are grateful for continued innovation and research into new treatment and dosing options to meet the needs of more patients and reduce the treatment burden. With the approval of Ultomiris, we’re excited that MG patients now have another option to consider as part of their personalised treatment strategies that may offer more convenience and improve muscle weakness.”

You can read more about this critical new treatment at the link below.

https://www.astrazeneca.com/media-centre/press-releases/2022/ultomiris-approved-in-the-us-for-adults-with-generalised-myasthenia-gravis.html

 

Safety and tolerability of SARS-Cov2 vaccination in patients with myasthenia gravis – Vaccination Strongly Recommended

NIH Publications

April 7, 2022

During the COVID-19 pandemic, Myasthenia gravis (MG) patients have been identified as subjects at high-risk of developing severe COVID-19, and thus were offered vaccination with priority. The lack of direct data on the safety and tolerability of SARS-CoV-2 vaccines in MG have contributed to vaccine hesitancy. To address this issue, the safety and tolerability of SARS-CoV-2 vaccines was assessed in a large cohort of MG patients from two referral centers.

Patients with confirmed MG diagnosis, consecutively seen between October and December 2021 in two MG centers were enrolled. Demographics, clinical characteristics, and information regarding SARS-CoV-2 infection/vaccination were extracted from medical reports and/or collected throughout telephonic or in person interviews.

Our data support the safety and tolerability of mRNA-COVID-19 vaccines, which should be strongly recommended in MG patients who could be at higher risk of complications if exposed to SARS-CoV-2 infection.

Review the published research in Doc Wire News.

https://www.docwirenews.com/abstracts/safety-and-tolerability-of-sars-cov2-vaccination-in-patients-with-myasthenia-gravis-a-multicenter-experience/

Read the actual full report in Wiley publishing and European Journal of Neurology

https://onlinelibrary.wiley.com/doi/10.1111/ene.15348

 

Latest MGFA-Supported MG Research – Adverse Event Unit Project – Published in PLOS ONE

PLOS ONE

March 29, 2022

Dr. Michael Hehir has shared and published the first paper from the Adverse Event Unit project. This important MG Research was published in PLOS ONE. The MGFA supported and provided early funding for the project process. This paper represents the first step in important efforts to understand the adverse event burden of the treatments medical professionals use for patients with myasthenia gravis and other neurological disorders.This project was initially supported by the 2016 MGFA/AAN/ABF Clinician Scientist Development Award. 

You can also read the RESEARCH PROJECT DOCUMENT HERE.

READ RESEARCH

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0262109

 

First successful bone marrow transplant for multi autoimmune syndrome in Iran

Tehran Times

February 15, 2022

Specifically, her myasthenia gravis was a refractory one with severe muscle weakness, resulting in repeated respiratory failures that required her to be intubated and mechanical ventilation at the ICU. However, the transplant team decided to perform such a treatment for the first time in Iran. Spending three months inspecting this demanding multidimensional job, ultimately autologous bone marrow transplant was chosen as the most effective approach to take.

 

Myasthenia Gravis Foundation of America (MGFA) Announces Annual Volunteer Awards at 2022 National Patient Conference

February 11, 2022

MGFA National Patient Conference is the largest online gathering of the myasthenia disease community: Prestigious volunteer awards recognize MG Community members for their impact and commitment.

The Myasthenia Gravis Foundation of America (MGFA), the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of those living with MG, announced today the recipients of its annual MGFA Volunteer Awards at the 2022 National Patient Conference.These unique volunteers and organizations have been recognized for their deep commitment to the MGFA and the MG community through patient advocacy, unprecedented medical advancements, and positive impact for those living with MG and caregivers as well as everyone across the community.

READ MGFA's FULL NEWS RELEASE

 

argenx Announces U.S. Food and Drug Administration (FDA) Approval of VYVGART (efgartigimod alfa-fcab) in Generalized Myasthenia Gravis

argenx SE (Euronext & Nasdaq: ARGX) announced on December 17, 2021 that the U.S. Food and Drug Administration (FDA) has approved VYVGART (efgartigimod alfa-fcab) for the treatment of generalized myasthenia gravis (gMG) in adult patients who are anti-acetylcholine receptor (AChR) antibody positive. These patients represent approximately 85% of the total gMG population. With this regulatory milestone, VYVGART is the first-and-only FDA-approved neonatal Fc receptor (FcRn) blocker.

“The gMG community has long-awaited the FDA approval of VYVGART, especially for those patients who struggle with basic personal tasks such as speaking, chewing and swallowing food, brushing teeth and hair, and in some severe cases, breathing,” commented Samantha Masterson, President and Chief Executive Officer of the Myasthenia Gravis Foundation of America. “We thank argenx for its continued commitment to the gMG patient community, which led them to deliver this much-needed new treatment option with the potential to change the lives of many gMG patients.”

Read the official press release:

https://www.argenx.com/news/argenx-announces-us-food-and-drug-administration-fda-approval-vyvgarttm-efgartigimod-alfa-fcab?fbclid=IwAR1y00kXjFM9xKm-QzaiE7fZuydwA_5zgR27Y_RH0F53R-3iL3w_4MNpp7s

 

UCB announces positive Phase 3 results for rozanolixizumab in generalized myasthenia gravis

UCB, a global biopharmaceutical company, today announced positive topline results from the Phase 3 MycarinG study1 evaluating rozanolixizumab, a subcutaneously (SC) infused monoclonal antibody targeting the neonatal Fc receptor (FcRn), versus placebo in adults with generalized myasthenia gravis (gMG). Overall rozanolixizumab was well tolerated and no new safety signals were identified. “For the many thousands of people living with myasthenia gravis around the world, current treatment options can be very limited,” said Samantha Masterson, Chief Executive Officer of the Myasthenia Gravis Foundation of America (MGFA). “Given that this disease causes a wide range of symptoms, some of which can require urgent intervention or hospitalization, there is a critical need for new treatment options that could address the unmet needs of patients living with myasthenia gravis.” 

 

MGFA Poised for 2021 Coast-to-Coast Walk 2740 Challenge

Myasthenia Gravis News

September 16, 2021

With the goal of raising funds and awareness to improve care and find a cure for myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) is hosting the 2021 Coast-to-Coast Walk and 2740 Challenge on Nov. 13.

 

Australian wheelchair rugby player overcomes rare disease to be in the Paralympics

Tokyo Paralympic.org

August 27, 2021

Richard Voris was left out of Australia’s wheelchair rugby team that won the Rio 2016 gold medal, despite being a regular in the squad since 2013. The reason was an autoimmune disease called Myasthenia Gravis. But he is back!

 

Unstoppable Glenda Thomas Made Incredible Accomplishments Despite her MG

Authority Magazine

July 12, 2021

As part of our “Unstoppable” series, I had the pleasure of interviewing Glenda Thomas. She was diagnosed with MuSK myasthenia gravis (MG) and has been an active volunteer for the Myasthenia Gravis Foundation of America

 

Together We are Turning Awareness into Action

Metropolis Planet

June 16, 2021

In fact, at that time, I had never even heard of Myasthenia Gravis (MG). Now, during the month of June, we are #MGSTRONG, and together, we “Turn MG Awareness into Action.”

 

Framingham's Glenda Thomas Named to Serve on State Rare Disease Board

MetroWest Daily News

June 7, 2021

The Framingham resident recently added another title to her ever-growing resume. Thomas was recently appointed to the newly formed Rare Disease Advisory Council of Massachusetts.

 

MGFA Events Set to ‘Turn Awareness Into Action’ Throughout June

Myasthenia Gravis News

June 1, 2021

MG Action Month — Turning Awareness into Action is this year’s theme. MGFA has a host of events and activities planned, including a live, virtual interactive map that showcases individual stories, with states and countries “lighting up” to indicate Awareness Month activity. The organization is inviting the entire MG community to participate.

 

NEWS RELEASE: Glenda Thomas Selected as Member of the Rare Disease Advisory Council of Massachusetts

May 25, 2021

Glenda Thomas, an MG advocate, patient, and Bay State resident who has been an extremely active volunteer, has been appointed as the first-ever MG advocate to the newly-established Rare Disease Advisory Council of Massachusetts. Glenda will be publicly sworn in during an online ceremony on Thursday, May 27, 2021 at 11:30 a.m Eastern. Read the News Release to access the zoom link for the online ceremony. 

 

Comparison Between Rituximab Treatment for New-Onset Generalized Myasthenia Gravis

JAMA Neurology

May 4, 2021

Does the response to rituximab differ between patients with new-onset vs refractory generalized myasthenia gravis, and how does rituximab compare with conventional immunotherapy in these patients?

 

NEWS RELEASE: Myasthenia Gravis Foundation of America Presents Annual Volunteer Awards at 2021 National Conference

April 11, 2021

Largest Patient Advocacy Organization Solely Committed to Myasthenia Selects MG Community Members for Prestigious Awards that Recognize Impact, Advocacy, and Dedication

 

Her Eyelid Drooped and She Kept Getting Weaker. What Was Going On?

New York Times Magazine

March 4, 2021

Dozens of tests turned up nothing. Then a specialist had a theory. It was myasthenia gravis.

 

MG Patients Should Be Priority for COVID-19 Vaccine, Report Says, Citing Risks

Myasthenia Gravis News

March 2, 2021

University of Arkansas data suggests MG patients should be positioned higher in the eligibility list to receive the COVID-19 vaccines.

 

Secrets to Living Longer and Feeling Healthy with Plant-based Diet

The Beet

February 13. 2021

MG patient Fran German and husband switch to plant-based diet and feel younger and healthier.

 

National Organization for Rare Disorders (NORD) Adds MG to RareCare Support Network

NORD Website

January 24, 2021

NORD has added myasthenia to its RareCare support network. The network provides assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/ You can find out more about the MG Patient Assistance Programs and other supportive patient assistance from NORD HEREbit.ly/NORDAssistance

 

argenx Officially Files for FDA approval of Efgartigimod for Generalized MG

Myasthenia Gravis News

January 12, 2021

argenx has officially files for U.S. FDA approval of Efgartigimod for generalized MG.

 

Double-seropositive myasthenia gravis: a distinct subtype?

Neurological Sciences

January 12, 2021

This study investigated the characteristics of double-seropositive myasthenia gravis (DSP-MG) in southern China for disease subtype classification.

 

2020 Coverage

 

AstraZeneca Agrees to Acquire Alexion, the Maker of Soliris, for $39 Billion 

Alexion.com

December 12, 2020

Alexion, a Boston-based rare disease pharmaceutical and MGFA industry partner, has entered into an agreement to be acquired by AstraZeneca, one of the world’s largest drug companies.  READ MORE

My Cause, My Cleats: Dexter Williams of the Green Bay Packers Supports MG Awarenesss

Packers.com/Sports Illustrated

December 6, 2020

Dexter Williams of the NFL Green Bay Packers decorates his cleats to direct attention to those with myasthenia during annual "My Cause, My Cleats" initiative. READ MORE

 

International Experts Update, Expand MG Management Guidelines

Myasthenia Gravis News

December 4, 2020

A panel of 16 international experts, initially selected by MGFA, has updated and expanded recommendations for best management of myasthenia gravis (MG). READ MORE

 

MDA Wants Neuromuscular Disease Patients to have Early Access to COVID-19 Vaccine

Myasthenia Gravis News

December 4, 2020

The Muscular Dystrophy Association is encouraging the U.S. CDC to recommend that people living with neuromuscular diseases (NMDs) such as myasthenia have early access to any federally approved COVID-19 vaccine. READ MORE

 

Plasma Shortage Intensified Because of COVID-19

The Morgan Hill Times

October 7, 2020

With the Covid-19 pandemic cancelling many donation drives throughout the nation, the Myasthenia Gravis Foundation of America is reporting a severe shortage of plasma donations. Read interview with volunteer Deborah Vick. READ MORE

 

Research survey for rare disease patients and their families about impacts of COVID-19

MGFA Published Survey

April, 2020

How is the novel coronavirus pandemic impacting people with rare diseases and their families? Complete the 20-minute research survey from home or learn more at this link. The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases. The Myasthenia Gravis Foundation of America and Conquer MG partners with RDCRN through its work with the Myasthenia Gravis Rare Disease Network (MGNet).

 

Guidance for the management of Myasthenia Gravis (MG) and Lambert-Eaton Myasthenic Syndrome (LEMS) during the COVID-19 pandemic

International MG/COVID Working Group

March 23, 2020 
International MG/COVID-19 Working Group1SaijuJacoba2SrikanthMuppidib2AmandaGuidoncJeffreyGuptilldMichaelHehireJames F.HowardJrfIsabelIllagRenatoMantegazzahHiroyukiMuraiiKimiakiUtsugisawajJohnVissingkHeinzWiendllRichard J.Nowakm2


Coronavirus Disease 2019 (COVID-19) is a new illness caused by a novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Symptoms are variable but typically include fever, cough, respiratory symptoms, diarrhea, reduction of smell and taste sensation. Severity ranges from mild to severe and the virus may lead to pneumonia, acute respiratory distress syndrome and death, in some patients. Nearly every country in the world has been affected by this virus and is currently defined as a pandemic, by the World Health Organization. There are no known proven therapies for treating this virus and no vaccine to prevent the infection at this time. 

The full guidance is available here


MGNet Webinar- "Myasthenia Gravis and the COVID-19 Epidemic: Things for you to know" 

MGFA Program

March 18, 2020

Presenters: Hana Axelrod, MD, MPH; Henry J. Kaminski, MD; Helen Girma, George Washington University Department of Neurology
We are pleased to share that the MGNet webinar, “MG and COVID-19: Things for you to Know” has been recorded and is available for viewing. We apologize for any technical difficulties in registering or participating in the webinar on March 18.

To view the recording of this webinar, please see here

 

MG Walks and COVID-19 (Coronavirus)

MGFA Fundraising News

March 2020

The health and safety of our participants, sponsors, volunteers and staff is our top concern. Currently, ALL spring walks from March 14-May 30 have been postponed until further notice. Additional details can also be found on our MG Walk website here.
We will look at potential dates for this fall and keep you updated as we learn more.  If we are able to secure a fall date, then all donations will roll over to the new walk date. 

**Any decisions made going forward will absolutely be dependent on where we are at with this global health crisis.


COVID-19 (Coronavirus)- General Information and Management 

MGFA New Resources

March 2020

Due to the recent news regarding COVID-19 (coronavirus), we are providing some guidance around COVID-19, as well as reliable sources for information. See more information here

 

MGFA announces 2020 research funding opportunities

We are pleased to announce the release of our Request for Applications for our High Impact Clinical Research and Scientific Pilot Projects on Myasthenia Gravis and Related Neuromuscular Junction Disorders.

We are also very pleased to announce our first targeted research opportunity to benefit the Seronegative MG community

To learn about our research agenda and complete funding opportunities, see here

 

University of California, San Francisco, Launches First Consortium on Pediatric MG in Partnership with MGFA and MDA

For families with children that have myasthenia gravis, we have some exciting news to share. Thanks to a generous gift from an anonymous donor to the University of California, San Francisco, the first clinical Pediatric Myasthenia Gravis Consortium is now a reality.  MGFA was honored to provide a grant to underwrite the costs for the September inaugural meeting of this exciting new project, and to participate on the advisory committee for the Consortium.

 

GW Researchers Receive $7.8 Million to Establish Rare Disease Network for Myasthenia Gravis, MGNet, supported by commitments from MGFA and Conquer MG

MGFA is proud to represent the MG Community as a member of MG Net, and has committed $250,000 of funding ($50,000 for each year) to support the project.  This commitment from MGFA, as well as that of Illinois-based Conquer MG, was instrumental in demonstrating the support of the MG Community for the project—an essential component of the criteria for funding established by the NIH. Press release available here

 

The National Institutes of Health (NIH) has awarded a research team at the George Washington University (GW) $7.8 million to establish a rare disease network for myasthenia gravis. The network, which will be part of 25 established NIH Rare Diseases Clinical Research Networks, will include basic and clinical investigators, patient advocacy groups and biotechnology and pharmaceutical companies working together to enhance therapeutic development for this rare disease.  The team is led by former and current MGFA Medical and Scientific Advisory (MSAB) Chairs, Henry Kaminski, MD and Linda Kusner, PhD, and the steering committee members are all leaders of the MGFA MSAB as well. 

 

The grant will fund research into the underlying pathophysiology of the disease, provide fellowships in MG for young investigators, and fund pilot grants.  This funding will also ensure that the serum bank created by the MGFA’s transformative grant will continue.  

 

MGFA’s 2020 Virtual Conference, April 5-7- Recorded Presentations Available Here

To view recorded presentations, resources and sponsor information, please complete a brief registration form and visit our virtual conference space here.  Please see some helpful tips for navigating our virtual conference space here


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