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The latest info for the MG community is right 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 Statement on the IVIG Shortage

If you are encountering IVIG shortages at your facility, please report any potential or actual biological product shortages to the Food and Drug Administration, Center for Biologics Evaluation and Research (CBER) Email: CBERshortage@fda.hhs.gov Phone: (240) 402 -8380

 


From Lisa Romano, our I Am MG Strong video contest winner! https://www.silive.com/news/2019/06/great-kills-woman-hopes-to-bring-awareness-to-rare-disease.html
 

2019 June Awareness: check out a wrap-up of our inagural "Light the Map Teal" campaign for 2019 here
 

2019 Community Newsletter: check out the Fall Edition of MGFA New England Support Group Newsletter here.

 


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  • Focus on MG magazine: Our Focus on MG magazine is published twice a year. The magazine highlights MGFA programs and activities around the country. You can find useful information including MG community updates, practical advice on how to manage MG as a patient, caregiver, or friend and much more.  Read the most recent issue.
     
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