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MG In the News

The latest info for the MG community is right here! 

 

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.  READ MORE

 

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 
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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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