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Join MGFA at Rare Disease Week 2020!
Rare Disease Week is approaching quickly! To learn more about Rare Disease Week on Capitol Hill click here. To read about MGFA's involvement and advocacy, click here. We cannot act alone, together our voice is stronger. To join in, register 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.
MGFA announces 2019 Pilot Grant Awards
We are pleased to announce our pilot grant awards for the upcoming year. MGFA pilot grants recognize promising research in clinical and basic sciences for myasthenia gravis. Research grants are awarded based on our Research Agenda, which is focused around five priorities: biomarkers, diseases mechanisms, targeted therapies, patient outcomes and pediatric treatment. To learn more about our research priorities and funding, see here.
2019 High Impact Pilot Project Grant Award: Amanda C. Guidon, M.D., Massachusetts General Hospital, Neuromuscular Diagnostic Center, “Evaluation of automated techniques for decoding speech and movement abnormalities in myasthenia” $55,000
2019 High Impact Pilot Project Grant Award: Jeffrey T. Guptill, M.D., Duke University, “Metabolic Pathways of Pathogenic Th17 Cells in Myasthenia Gravis” $55,000
2019 High Impact Pilot Project Grant Award: Ricardo A. Maselli, M.D., University of California Davis, “CSF Delivery of AAV9-mediated gene therapy of congenital myasthenic syndrome due to CHAT mutations” $55,000
We wish to extend our congratulations to these recent grantees. With this promising work in the pipeline, coupled with the efforts of MGNet, the MG research landscape has never looked brighter!
To learn more about our research grants, see here.
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.
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.
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
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Magazines & Newsletters
- 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.
- MG News: Our digital newsletter features the latest in MG research, clinical trial updates, advocacy and more. Our digital newsletter incorporates information from the public sector, private sector and from MGFA all in one place. Add your email address to our mailing list and receive information on research, clinical trial opportunities, MG events and more direct to your inbox!