Pathogenic properties of myasthenia gravis AChR autoantibodies associate with clinical response to efgartigimod
Journal of Neurology, Neurosurgery, and Psychiatry
June 4, 2026
Donor support is helping advance research that could make treatments for myasthenia gravis more effective and personalized. In a newly published study co-authored by MGFA-funded researchers, including McSpadden Fellow Fatemeh Khani-Habibabadi, PhD, the team found that patients’ responses to efgartigimod may be linked not just to the amount of disease-causing antibodies they have, but to how those antibodies behave and affect the neuromuscular junction. These findings could help pave the way for better tools to predict treatment response and guide care for people living with MG.
Read the Paper AbstractMGFA funds research exploring IgA autoantibodies and MuSK myasthenia gravis
Brain
June 2026
Work published by Dr. Gianvito Masi, who received the MGFA’s High Impact Pilot Project Award in 2024, moves forward our understanding of what causes some types of MuSK myasthenia gravis. He and his collaborators – among them three other MGFA grant recipients – discovered MuSK-specific IgA autoantibodies in a subset of patients with MuSK MG and demonstrated that these antibodies can contributed directly to disease pathology.
The authors note that “the identification of MuSK-specific IgA B cells could signal a role of mucosal or environmental factors in the pathogenesis of MuSK MG and other IgG4-mediated diseases, offering a worthy avenue for future research.”
Read the Paper AbstractMapping genetic risk mechanisms for immune-mediated diseases across human dendritic cell differentiation
May 30, 2026
In this preprint article, 2025 MGFA High Impact Pilot Project Award recipient Dr. Vijay Sankaran and colleagues share how they created a detailed map of how genetic variations influence dendritic cells—key regulators of the immune system—and identified pathways that may contribute to immune-mediated disease. This foundational research could advance our understanding of how complex immune diseases can emerge.
Note: This article is a preprint and has not been certified by peer review.
Read MoreMyasthenia Gravis Foundation of America (MGFA) Announces the Start of
Myasthenia Gravis Awareness Month Around the World
June is MG Awareness Month – Global campaigns focus on patient and caregiver inspiration, support and education, and community action to promote broader understanding of rare disease
May 29, 2026
BOSTON, MA – May 29, 2026 – Myasthenia Gravis Foundation of America® (MGFA), the largest, leading patient advocacy organization in the United States solely dedicated to the myasthenia gravis (MG) community, announced the start of MG Awareness Month around the world. MG community members including patients, care partners, and healthcare providers host advocacy activities in June each year to promote a broader global understanding of the rare autoimmune disease myasthenia gravis and how it impacts patients’ quality of life.
Approximately 70,000 to 100,000 individuals are diagnosed and living with MG in the United States alone. MG patients exhibit debilitating physical symptoms such as extreme fatigue and muscle weakness that impact a person’s ability to see correctly, swallow, smile, walk or breathe. This rare disease can impact anyone at any time in life. Though new MG research and FDA-approved treatments are available, it usually takes months or even years to diagnose MG, which is too long to live with life-changing symptoms. Raising awareness about MG can potentially help those impacted find treatments quicker – taking action for broader MG awareness can make a difference.
In light of the damaging impact of the disease, MG community members take great pride in creatively planning and hosting awareness activities – everything from fundraisers, media coverage, events and gatherings, legislative advocacy, home and structure lightings, social media sharing, and more – that will increase awareness of the effects of the disease while outlining new treatments and progress.
MGFA provides toolkits, ideas, and methods of taking action and driving broader awareness. The organization also raises funds through its MG Heroes and DARE to CARE programs that support MG research grant funding and educational materials and events. MGFA educates and informs advocates, empowers patients and care partners, and funds critical research that could lead to better treatments and A World Without MG. You can visit the MGFA at myasthenia.org.
MGFA funds research projects aimed at understanding MG biology
Myasthenia Gravis News
May 15, 2026
The Myasthenia Gravis Foundation of America (MGFA) awarded four grants, each valued at $110,000, to research projects aimed at better understanding the biology of myasthenia gravis (MG) and improving its diagnosis and treatment.
“MGFA is helping to fuel a sea change in myasthenia gravis diagnosis and care,” Samantha Masterson, MGFA’s president and CEO, said in an emailed statement to Myasthenia Gravis News. “Through our grant program, we invest in science that deepens our understanding of the mechanisms and impacts of disease, with the goal to make life better for everyone living with this rare disease.”
Read MoreYale researcher studies overlooked antibodies in rare muscle disease
CT Insider
May 9, 2026
A Yale researcher studying a rare autoimmune disease hopes to uncover why some patients with myasthenia gravis don’t fully respond to existing treatments — work that could eventually pave the way for more personalized therapies.
Dr. Alexandra Bayer Wildberger, a Yale post-doctoral student, received the 2026 Next Generation Research Grant in Myasthenia Gravis, co-funded with the American Brain Association.
Read MoreMGFA Funds Four Research Projects in Myasthenia Gravis through the High Impact Pilot Project Award
March 27, 2026
Myasthenia Gravis Foundation of America, the leading patient advocacy organization solely focused on myasthenia gravis, is pleased to announce recipients for the 2025 High Impact Pilot Project Award.
Four researchers were selected for the 2025 award:
- Valentina Damato, MD, PhD, University of Florence, Italy
- Sarah Hoffmann, MD, PhD, MSc, Charité – Universitätsmedizin Berlin, Germany
- Maartje G. Huijbers, PhD and Dana Vergoossen, PhD, Leiden University Medical Center, The Netherlands
- Vijay G. Sankaran, MD, PhD, Harvard Medical School, United States
This grant funds clinical research focused on patient outcome measurements or advancements in clinical or research practices that improve present treatment paradigms. MGFA’s goal is to support early stage research that will lead to new federal, pharmaceutical, or private foundation-supported investigations.
This is the second time that the MGFA has funded grant projects outside of the United States in our mission to invest in cutting-edge science driving toward better MG care. Award recipients hail from Italy, Germany, The Netherlands, and the United States.
This exemplary group of scientists focus on a range of topics in myasthenia gravis and autoimmunity. Their funded studies will explore the inherited genetic component of MG, predictive biomarkers, disease biology across the full arc of MG, and MuSK antibody structure.
MGFA’s grant program is part of the nonprofit’s mission to enhance lives and improve care through scientific discovery.
Since the organization’s inception in 1952, the MGFA has led the charge to support the most promising scientific endeavors—funding research, engaging young scientists and clinicians, and spearheading a comprehensive patient registry. Research has led to significant improvements in diagnostic techniques, treatments and therapies, and improved disease management. Learn more about the MGFA’s research agenda.
Read About RecipientsNew patient registry aims to collect real world evidence on MG in US
MGFA teams up with Vitaccess to build long-term data tracking platform
Myasthenia Gravis News
February 18, 2026
Aiming to address a persistent gap in myasthenia gravis (MG) research, Vitaccess is teaming up with the Myasthenia Gravis Foundation of America (MGFA) to expand real-world data collection in MG.
As part of the new exclusive agreement, MGFA will become the official collaborator for the Vitaccess Real MG (VRMG) registry, a patient-centered platform designed to generate comprehensive, real-time evidence on the rare autoimmune disease. The goal of the new registry is to better inform clinical trials and, ultimately, improve patient care for those living with MG, according to a company press release announcing the partnership.
Read MoreVitaccess and Myasthenia Gravis Foundation of America form strategic partnership to advance generation of real-world evidence in MG
February 12, 2026
Boston, MA, USA and Oxford, UK – Vitaccess, a leader in generating science-driven, real-world evidence, has entered into an exclusive partnership with the Myasthenia Gravis Foundation of America (MGFA), making the MGFA the official collaborator for the Vitaccess Real MG (VRMG) registry, to create one of the most comprehensive patient-centered evidence platforms in myasthenia gravis (MG).
The partnership addresses a critical challenge in MG, a rare and highly-unpredictable autoimmune disease: while clinical trials demonstrate efficacy, they rarely capture the longitudinal patient experience that regulators, payers, and Health Technology Assessment (HTA) entities increasingly demand. The VRMG registry will integrate clinical data with patient-reported outcomes, tracking treatment effectiveness, symptoms, and quality of life over an extended period of time in real-world settings. This will generate decision-grade evidence to support regulatory submissions, market access, and commercial strategy that will help to develop new effective therapies for MG patients more quickly.
The collaboration will:
- Introduce the MGFA’s existing registry members and their broader patient and physician community to the VRMG platform.
- Integrate the MGFA’s 10+ years of legacy registry data into a confidential, secure MG repository, offering a valuable resource for retrospective analyses.
- Bring MGFA’s voice to the VRMG Scientific Advisory Board, ensuring that the registry continues to reflect patient and clinician priorities.
- Strengthen opportunities for investigator-led studies, as the MGFA continues to offer academic grants to support research on MG datasets.
- Enhance clinical trial recruitment by enabling researchers to identify and engage eligible participants more efficiently through the expanded and enriched MG registry ecosystem.
“There’s a gap between what clinical trials can show and what decision-makers need to see,” said Mark Larkin, PhD, CEO and Founder of Vitaccess. “This is particularly evident in a disease like MG. We’ve been conducting patient-centred research in MG since 2019, always with advocacy groups. This partnership with MGFA is exciting – we are combining their years of patient trust with our scientific expertise and technology-enabled patient engagement infrastructure, creating sustained patient relationships that compound in value over time. Together we will build evidence that we believe will ultimately improve outcomes for patients and caregivers living with MG.”
Samantha Masterson, President and CEO of the MGFA said: “Our community has always understood the value of contributing to research that can improve the quality of life for individuals living with MG. This partnership ensures that those powerful patient contributions influence groundbreaking discoveries and potential new treatments. Vitaccess’s scientific rigor, proven track record of generating regulatory-grade evidence, and ability to design studies from Phase I through post-marketing sets it apart from technology-only solutions, making Vitaccess the ideal research partner. The data our members have shared over the past decade will now inform a new wave of evidence and holds immense potential to help researchers, clinicians, and pharmaceutical companies understand MG in ways that were not possible in the past.”
MG is a rare, chronic neuromuscular autoimmune condition causing fluctuating fatigable muscle weakness, often starting in eyes, face, or throat, causing droopy eyelids, double vision and difficulty talking and swallowing, and can affect arms, legs, and breathing. MG has highly variable disease presentation, with symptoms of the disorder influenced by the specific cause, type, and other factors.
Partnership opportunities
Vitaccess invites pharma and biotech partners to explore how the VRMG registry can support evidence needs across the product lifecycle, from early development through post-approval. The registry offers multiple collaboration models including strategic data partnerships, custom sub-studies, and support for clinical trial feasibility and recruitment.
Upcoming webinar
MGFA and Vitaccess will host a virtual informational webinar on Friday, February 20, from 2:00–3:00 PM EST / 7:00–8:00 PM GMT, to provide an overview of the VRMG registry and a walkthrough of how patients and healthcare professionals can participate. We look forward to sharing more details soon and encourage all interested members of the MG community to join us and learn how they can contribute to this important initiative.
About the Vitaccess Real MG (VRMG) registry
Vitaccess Real MG is a patient registry designed to capture longitudinal observational data on myasthenia gravis, its treatment, and impact on symptoms, daily activities, and quality of life. The registry links direct patient-reported data with data reported by healthcare professionals and data from patients’ medical records.
About Vitaccess
Vitaccess is a UK-based leader in real-world evidence generation, closing the insight gap for biopharma companies, by putting patient voices at the center of research that matters. Through scientifically rigorous, expert-led patient research, we deliver the full spectrum of evidence generation, from qualitative concept elicitation through longitudinal registries. Vitaccess integrates Electronic Medical Record (EMR) data with patient-reported outcomes, qualitative research, and preference studies, providing nuanced real-world evidence that supports payer and regulatory decision-making, across a range of therapeutic areas including rare diseases, oncology, respiratory, and hematology.
To learn more, visit our website: https://vitaccess.com
About the Myasthenia Gravis Foundation of America
Myasthenia Gravis Foundation of America (MGFA) is the largest, leading patient advocacy organization in the United States solely dedicated to finding better treatments and supporting individuals living with the rare autoimmune, neuromuscular disease myasthenia gravis. We fund the most promising critical research discoveries and provide patient-centric programs and educational materials to connect members of the global MG Community and improve the lives of those living with MG.
Media contact
Michael Antonellis
Vice President, Global Marketing & Communications
Myasthenia Gravis Foundation of America
Thanks to an MGFA grant, data from MG patient registry leads to new journal article
January 8, 2026
An MGFA research grant fueled insights into how clinical features and disease burden of myasthenia gravis might differ between racial and ethnic groups. Researchers found
- White MG patients are predominantly late-onset, while African American and Hispanic patients are predominantly early-onset
- Higher frequency of limb/bulbar symptoms and higher baseline MG-ADL/MG-QOL15r scores were observed in African American and Hispanics
- Psychiatric impacts of MG include anxiety and/or depression
- African American and Hispanic patients had higher odds of intubation and greater hospitalization costs
- White patients had higher odds of inpatient mortality
Read more about this study in the Journal of the Neurological Sciences.
2025 MGFA Scientific Session recordings now available
December 2, 2025
On October 29, the MGFA hosted its annual Scientific Session at the AANEM Annual Meeting. This gathering brings together researchers, neurologists, early career investigators, and other physicians to discuss the newest “bite-sized science” driving us toward a world without myasthenia gravis.
Researchers, scientists, clinicians, and other MG Community members with an interest in the latest MG science can now view presentations from the event. Find all sessions on this YouTube playlist.
MGFA Grant-Funded Research Published in Brain and Proceedings of the National Academy of Science (PNAS)
November 11, 2025
Researchers at Yale University have published two important scientific papers this October. Their work, funded in part by the MGFA, explores the role of antibodies and autoantibodies in myasthenia gravis.
A study published in Brain offers new insights into MuSK myasthenia gravis.
This study, led by Dr. Gianvito Masi in Dr. Kevin O’Connor’s lab, shows that another antibody class, IgA, may play a role in the disease. IgA antibodies are usually found at mucosal sites, such as in the gut and lungs, where they help protect against infections. Researchers discovered that a subgroup of patients with MuSK MG also carries IgA autoantibodies targeting MuSK.
A study published in PNAS uncovered a new role for IgM autoantibodies in MG.
In MG, the body’s immune system makes autoantibodies that interfere with the signals between nerves and muscles, leading to weakness. Most often, these harmful autoantibodies belong to the IgG class, but their new research has shown that in some people, another type, called IgM, can also play a major role.
Read more about these two studies via the link below.
Read MoreMGFA Honors British Neurologist With First Lifetime Award for Groundbreaking MG Research
Rare Disease Advisor
July 10, 2025
THE HAGUE, Netherlands—Angela Vincent, MBBS, is one of the world’s most recognized experts in myasthenia gravis (MG). But she might never have achieved that status had she remained at her initial London, England hospital job, performing appendectomies and delivering babies.
Earlier this year, the Myasthenia Gravis Foundation of America (MGFA) awarded the British scientist its first Lifetime Achievement Award during the 15th International Conference on Myasthenia and Related Disorders here.
“Angela has been a fixture at the front of myasthenia gravis research for 50 years,” said Kevin O’Connor, PhD, the foundation’s chief scientific advisor, in presenting the award. “She became a well-respected scientist when there were very few women in [science, technology, engineering, and mathematics (STEM)]. Her work is broad and has been published in the world’s top journals. Her work is lasting and durable, and her research stands the test of time.”
Patients at MGFA Conference Offer Insights on Living With Myasthenia Gravis
Rare Disease Advisor
May 13, 2025
THE HAGUE, Netherlands—Four women from four European countries shared what it’s like to live with myasthenia gravis (MG), during a session at Myasthenia Gravis Foundation of America (MGFA)’s first-ever gathering outside the US.
The MGFA 15th International Conference on Myasthenia and Related Disorders attracted 650 clinicians, researchers and patient advocates from 44 countries to this Dutch city.
Standing with the Rare Disease Community: MGFA Supports Newborn Screening Advocacy
MGFA Statement
May 7, 2025
MGFA recently signed a letter led by the National Organization for Rare Disorders urging the federal government to reinstate the Advisory Committee on Heritable Disorders in Newborns and Children. The termination of this advisory body could have long-term consequences for families affected by rare diseases, especially those with heritable or early onset conditions.
While most cases of myasthenia gravis are not detected at birth, congenital myasthenic syndromes, a group of rare, hereditary disorders of the neuromuscular junction, can appear in infancy and are part of the broader rare neuromuscular disease landscape. Supporting this letter reflects the MGFA’s commitment to:
- Early detection and intervention for rare diseases.
- Protecting federal infrastructure that benefits our entire community.
- Standing in solidarity with other patient organizations fighting for recognition, resources, and better health outcomes.
We believe that every baby born with a treatable rare condition or disease deserves a chance at early diagnosis and care. Diagnosing diseases, even when a cure is not available, is crucial to understanding disease, guiding research efforts to eventually find cures. Preserving and strengthening our nation’s newborn screening system is a vital part of supporting healthcare needs today and for future generations.
Thank you for being part of this community and for continuing to advocate with us.
FDA Approves FcRn Blocker Nipocalimab for Broad Forms of Generalized Myasthenia Gravis
Neurology Live
April 30, 2025
MGFA leadership shared thoughts on the recent FDA approval of another treatment option for myasthenia gravis.
“We consistently hear from individuals living with myasthenia gravis who are hopeful for new treatment options that may help bring greater stability, independence, and predictability to their lives,” Samantha Masterson, president and chief executive officer at the Myasthenia Gravis Foundation of America, said. “Today’s announcement provides another option which could help address the constant uncertainty and heavy physical and mental toll that MG symptom relapse presents to patients and their families.”
MGFA Funds Research that Reveals Mechanisms That Cause AChR Myasthenia Gravis
April 8, 2025
Groundbreaking research funded in part by an MGFA grant was published in Cell on April 8. In the study, “Autoimmune mechanisms elucidated through muscle acetylcholine receptor structures,” researchers analyzed the autoantibodies of six different myasthenia gravis patients. They discovered that these antibodies can disrupt the normal receptor functioning in a variety of ways.
Read more about this important study on the University of California – San Diego’s website.
MGFA patient conference highlights wellness education, science
Myasthenia Gravis News
April 1, 2025
More than 500 members of the myasthenia gravis (MG) community are expected at this year’s MGFA National Patient Conference, featuring strategies for patient education, advances in science and treatment, and discussions on managing MG.
“Our program this year includes a truly compelling mix of new treatment updates, strategies for improving quality of life, and helpful methods of advocating for patient needs,” President and CEO Samantha Masterson said. “We are so proud to host this extremely impactful event every year.”
MGFA’s Continued Support of MG Research
February 13, 2025
The Myasthenia Gravis Foundation of America (MGFA) is closely monitoring executive actions regarding federal research funding and will keep the MG community updated on any developments affecting ongoing or future research efforts. Investigators nationwide have expressed growing uncertainty and concern about funding stability. Despite these challenges, the MGFA remains committed to supporting the research community and their groundbreaking work in understanding and treating MG.
Academic research is crucial for driving breakthroughs that improve the lives of those with MG. Advancing and funding research is essential for uncovering the causes of MG and developing new treatments to alleviate its debilitating symptoms. While the MGFA and other organizations provide research grants, federal institutions remain the primary funders of independent academic laboratories conducting MG research.
MGFA reaffirms its deep commitment to supporting and advocating for research funding to drive innovation and improve outcomes for individuals living with MG. This commitment is an integral part of the MGFA’s ongoing mission to enhance the lives of those affected by this challenging condition.
MGFA and Bionews Partner to Deliver Myasthenia Gravis News to Wider MG Community
MGFA News Release
January 9, 2025
Myasthenia Gravis News, delivered by Bionews, is an online news source intended to provide the myasthenia gravis (MG) community with the most recent news and information about MG, as well as first-hand community perspectives from patient and caregiver columnists. This news feed features timely articles focused on a number of topics, including new MG research, patient and caregiver stories, new treatments and study outcomes, general MG management information, and helpful tips from across the MG community.
MGFA understands the value of this timely information to individuals living with MG, so we have partnered with Bionews to feature the Myasthenia Gravis News feed on the MGFA website. Now, visitors to myasthenia.org have direct access to the information and news stories delivered by Bionews.
Learn more and access the news feed
MGFA Awards Grant to Explore Immunopathology of Seronegative Myasthenia Gravis
MGFA News Release
January 7, 2025
Myasthenia Gravis Foundation of America is pleased to announce the recipient of the 2024 Nancy Law Impact Award: Dr. Kevin C. O’Connor, a professor of neurology and immunobiology at Yale School of Medicine. This prestigious award includes a $300,000 grant to support Dr. O’Connor’s research project.
Dr. O’Connor’s project is designed to better understand the abnormal immune system functions contributing to seronegative myasthenia gravis.
Many individuals diagnosed with MG have specific autoantibodies in their blood known to disrupt communication between nerves and muscles. Seronegative MG is a subset of the disease in which no known autoantibodies are detected that could account for disease symptoms.
As Dr. O’Connor highlighted in his proposal, those living with seronegative MG often face greater challenges in accessing treatments and medical care. Gaining deeper insight into the immune system abnormalities underlying seronegative MG is essential for the development and approval of new therapies.
Through our grant program, the MGFA funds promising research to discover potential new treatments and ways to improve quality of life for those with MG. In 2024, the MGFA dedicated more than $1 million to research.
Learn more about Dr. O’Connor and his research
MGFA Awards $330,000 in Research Grant Funding
MGFA News Release
September 6, 2024
Myasthenia Gravis Foundation of America is pleased to announce our latest grant recipients. Three researchers were selected for the 2024 MGFA High Impact Pilot Project Award. Their work represents an exciting step forward in our understanding of myasthenia gravis.
Learn more about the recipients and their research
Marking MG Awareness Month, Foundation Sees ‘Tremendous’ Progress in New Therapies
Rare Disease Advisor
June 10, 2024
Christy Collins and Kathi Timothy were among 400 people who attended MGFA’s recent 2024 conference in nearby Tampa; another 500 or so tuned in online.
Samantha Masterson, the foundation’s CEO, said she’s seen “tremendous” progress in treatments for MG, with 4 new therapies approved by the US Food and Drug Administration (FDA) over the past 3 years.
“Now there are 7 FDA-approved therapies for the disease,” she said. “Myasthenia gravis is leading the rare disease space with discoveries. It’s a very exciting time, especially with translational research.”
Myasthenia Gravis Foundation of America (MGFA) Kicks off Annual National MG Patient Conference With Program Announcements
MGFA News Release
April 27, 2024
More than 400 members of the myasthenia gravis (MG) rare disease community will come together this week at the MGFA National Patient Conference for support and a better understanding of how to manage their disease while learning about the latest in treatments and clinical studies. MGFA is making a series of announcements at the event while highlighting new information and programs to help individuals living with MG.
MGFA Medical and Scientific Advisors’ Statement on Recent New Candidate Biomarker Research Report
MGFA Statement
February 8, 2024
You may have read recently that a University of Alberta research team announced that it may have identified a candidate universal biomarker (fibrinogen – a key component of blood clotting) for myasthenia gravis (MG). In newly published research, the team reports that it used advanced proteomics techniques to identify this candidate biomarker that can be detected with a blood test to provide an MG diagnosis.
The medical and scientific advisors at the Myasthenia Gravis Foundation of America (MGFA) have evaluated this report and agree that the findings are intriguing and may have considerable impact in both MG research and clinical care. That said, as with all new scientific discoveries, independent validation will be required to confirm the findings. We look forward to additional research in this area to understand the possible role and utility of fibrinogen in MG. Biomarker research remains a critical priority in the field of autoimmune MG.
Myasthenia Gravis Foundation of America (MGFA) Announces Official Start of MG Awareness Month Around the World
MGFA News Release
June 1, 2023
Global myasthenia gravis community taking action in June to spread awareness about rare disease and highlight
debilitating challenges experienced by patients. The MG Community around the world is turning Awareness into Action in June to educate everyone about the challenges of the rare neuromuscular disease myasthenia gravis (MG).
Nowak Receives Impact Award from the MGFA
Yale School of Medicine Website
April 12, 2023
The Myasthenia Gravis Foundation of America (MGFA) has awarded its Impact Award to Richard Nowak, MD for his exceptional leadership, collaboration, innovation, and dedication to advancing the mission of the MGFA. Dr. Nowak was formally recognized at the 2023 MGFA National Patient Conference in New Orleans, La.
Myasthenia Gravis Foundation of America Announces Alliance with Patients Rising to Offer MG Patient Advocacy and Support Services
MGFA News Release
February 27, 2023
Myasthenia Gravis Foundation of America is aligning with Patients Rising, a Washington D.C.-based non-profit that provides education, resources, and advocacy for people living with chronic and life-threatening illnesses. Patients living with myasthenia gravis (MG) will benefit from The Patient Helpline for support services as well as educational patient advocacy and legislative training.
Using the Myasthenia Gravis Patient Registry Management for Research Studies: Paul Strumph, MD
Neurology Live
February 9, 2023
Recently, the Myasthenia Gravis Foundation of America (MGFA) re-launched its MGFA Global MG Patient Registry to combat these challenges for patients. In a recent interview, Paul Strumph, MD, chief medical officer at Seraxis Pharmaceuticals, and patient with MG, sat down with NeurologyLive® to discuss the attributes of the MGFA’s patient registry from a research focused perspective. He spoke on how patients can retrieve information about research studies through the registry and it how it helps researchers identify the right patients. Strumph, lead of the MGFA Global MG Patient Registry, also talked about the registry is managed by the organization with the goal of generating research.
Significance of Relaunched Patient Registry for Myasthenia Gravis Research: Richard Nowak, MD, MS
Neurology Live
February 7, 2023
The MGFA partnered with Alira Health to re-launch its MGFA Global MG Patient Registry. The registry allows patients with MG to submit their health data in a secure portal, thus facilitating research to gain more knowledge on the disease, improve patient outcomes, and possibly explore more effective treatments for MG. Richard Nowak, MD, MS, assistant professor of neurology, Yale School of Medicine, sat down with NeurologyLive® in an interview to talk about the relaunch of MGFA’s patient registry. Nowak, who also serves as MGFA’s chief medical advisor, spoke about the implications and the significance of research with using the registry to recruit patients in clinical trials.
GW Researchers Receive $7.8 Million to Establish Rare Disease Network for Myasthenia Gravis, MGNet, supported by commitments from MGFA and Conquer MG
George Washington University website
October 2, 2019
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.