We are MG Strong

The Myasthenia Gravis Foundation of America--Your MGFA

Striving for a World without Myasthenia Gravis

 

If you or someone you know is experiencing sudden or gradually increasing symptoms of muscle weakness, it could be a sign of MG or another serious condition.  
Talk to your doctor if you are short of breath, have difficulty smiling, talking or swallowing, or cannot walk any distance without having to rest.

 

What is Myasthenia Gravis (MG)?
 

Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.  Affecting both men, women, and children, MG can be diagnosed at any age.  Symptoms can be mild or severe, and may vary considerably from one person to another.  The disease can be ocular (causing double vision and drooping eyelids) or generalized, affecting the ability to speak, smile, use arms and legs, and at its worst, even to breathe.  Today, there are treatments, but presently no known cure. 

 

The Myasthenia Gravis Foundation of America (MGFA)

The Myasthenia Gravis Foundation of America is the only national voluntary health organization dedicated solely to myasthenia gravis and related disorders.  The mission of MGFA is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care.  Our vision is a world without myasthenia gravis. 

 

History:  It All Began With a Little Girl Named Patricia

When her daughter, Patricia, showed symptoms of myasthenia gravis, Jane Dewey Ellsworth was determined to find out everything she could about this strange disease. She found very little information and few resources for help. In 1952, determined to change this, she founded the Myasthenia Gravis Foundation of America, Inc. (MGFA).

 

Today, the Foundation touches the lives of hundreds of thousands of patients, families, friends, and medical professionals across the country and around the world. Through scientific research, educational literature, website and social media, awareness campaigns, support groups, conferences, and more,  MGFA is moving closer to our vision: A World Without Myasthenia Gravis.

 

Fulfilling the Mission—MGFA Programming

 

Driving Research to Find the Cause, Better Treatments, and a Cure for MG:

• Funding transformational research grants that may lead to new treatment pathways

• Funding post-doctoral fellowships to bring the brightest and best to the field of MG

• Bringing top researchers together to exchange ideas at national and international scientific seminars

• Advocating to legislators and the pharmaceutical industry for more MG research

• Advancing understanding of the disease and promoting clinical trials by managing and growing the MG Patient Registry, http://mgregistry.org/ .

 

The MG Patient Registry is owned and funded by MGFA.  It is the only scientifically based longitudinal database on MG in the country.  Launched in 2014, with new MG patients registering every month, the MG Registry is already yielding greater understanding of the patient experience, and has been used to support clinical trials.  WE URGE EVERY PERSON WITH MG TO JOIN!  To get started go to http://mgregistry.org/.  For more information see the MG Registry Brochure at www.myasthenia.org then go to Living with MG /Informational Materials.

Privacy Policy: The MGFA, MGFA Patient Registry Committee, and the University of Alabama at Birmingham’s Institutional Review Board for research all provide oversight for operation of the MG Patient Registry.  These work in parallel to ensure that the purposes and objectives of the registry are supported and to ensure that the rights and welfare of those enrolled in the registry are protected.  For a full text of the Privacy & Security Statement, visit the Registry Website at http://www.mgregistry.org and choose the Become a Participant tab.

 

Serving People with MG and Their Families:

• Providing accurate and timely information – through print, web, and social media.

• Connecting people living with MG to each other-- through a growing network of support groups, trained peer support volunteers, and social media.

• Delivering educational programming – through webcasts, podcasts, and videos.

• Answering questions and connecting people to community resources and MG specialty care through a telephone help line service.

• Bringing together more than 200 members of the MG Community at an annual educational conference.

• Providing a mobile app to enhance doctor/patient communication.

 

The myMG app is a tool that patients can use to help track their MG symptoms and employ when visiting their physician. Use this tool regularly, then, when visiting your doctor, print a tracking report from your computer and discuss with your doctor. http://mymg.myasthenia.org/home

 

Educating Health Care Professionals and Scientists

 

• Providing information and resources for professionals who treat people with MG, including a handbook: Myasthenia Gravis – A Manual for the Health Care Provider

• Raising awareness of MG in the larger medical community, targeting primary care physicians, ophthalmologist and optometrists, and emergency care providers.

• Hosting medical and scientific meetings and conferences:

  • The MGFA Scientific Session, held in conjunction with the annual meeting of the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM). This half day program brings together as many as 200 clinicians and scientists to learn about current research and treatment pathways in MG.

  • The International Conference on Myasthenia Gravis and Related Disorders, held once every 5 years in collaboration with the New York Academy of Sciences.  This three day meeting is the largest gathering in the world of clinicians and scientists focused on MG, drawing more than 300 participants from around the globe who connect to focus on the latest and most important scientific discoveries in MG. 

  • Educational Dinner Meetings for Nurses, held annually in conjunction with the MGFA National Conference

 

Raising Awareness and Advocating for Change

• Informing the public about MG through an annual MG Awareness Campaign

• Communicating news and information important to the MG Community through press releases, frequent e-blasts, social media, our website: www.myasthenia.org and the semi-annual newsletter Focus on MG .

• Connecting and empowering grassroots volunteers who are the heart of the MG Community to raise their voices on issues important to those living with the disease. 

• Advocating for key issues important to those affected by MG, such as increased funding for MG research, patients’ rights and access to care, disability rights, and family and caregiver support.  Partners include: NORD –The National Organization for Rare Diseases, The National Health Council, Research!America and the American Autoimmune Related Diseases Association (AARDA).

 

YOU Can Help MGFA Support People with MG and Their Families! 

 

Educate, Share & Raise Awareness

 

• Educate others about MG and the challenges it brings, and how MGFA can help. 

• Visit local physicians’ offices and ask permission to put out brochures or promote your local support group. 

• Staff an information table at a health fair or other venue.  MGFA can provide materials, banner, etc.  

• Participate in June is MG Awareness Month. Contact the MGFA office for a toolkit.

• Spread information about MG and the support MGFA can provide via the Internet and social media.  Use Facebook, Twitter, Instagram or start a blog. 

  • Become a peer support volunteer.  Organize an MG Support Group in your area, volunteer to help with an existing group, or provide telephone support to others as part of the MG Friends program. Call the MGFA office to learn more.   

  • Join our growing network of MG advocates. Write or call your legislative representatives about issues that are important to people with chronic illnesses.

  • Volunteer at an MG Walk or other special event,

 

Donate & Raise Funds

• Make a tax-deductible donation.  Also encourage your employer, family, and friends to make matching contributions. For more information go to http://myasthenia.org/HowcanIhelp/Donations.aspx.

• Join your local MG Walk!  People with MG, families, professionals and others connected to myasthenia gravis can help by becoming MG Walk team captains, walkers and fundraisers in your local market.  

• Become a Do It Yourself (DIY) fundraiser.  Host an event inviting friends, family, colleagues, and neighbors to participate and provide the proceeds to MGFA. Call the MGFA office at 1-800-541-5454 to talk about your idea and get a toolkit.

• Make a bequest to MGFA in your will.  For more information go to http://www.legacy.vg/myasthenia.

 

 

MG Walk Campaign

Why WALK?

The MG Walk Campaign is the flagship national awareness and fundraising campaign for the Myasthenia Gravis Foundation of America (MGFA). Since it started in 2011, the MG Walk has now raised a remarkable $5 million to help fund research for better treatments, much needed programs and services, education and unprecedented awareness to the public and an increase in advocacy efforts. The success of the MG Walks can be directly attributed to the tireless efforts and dedication of the amazing team captains, walkers, support groups, medical community representatives and businesses that support their local MG Walk events.

The MG Walk Campaign continues to bring together those in the MG Community to talk about their experience - many for the first time - and grow the resources and awareness desperately needed. While there are treatments, there is currently no cure for MG...and THAT is why we walk together toward the ultimate finish line...a world without myasthenia gravis!

If you are local MG constituent, member of the medical community or a business that would be interested in supporting the MG Walk Campaign, please contact Info@MGWalk.org or 1-855-MGWalks (649-2557). For a listing of all local MG Walks throughout the country and to learn many more exciting details about the Campaign, please visit www.MGWalk.org. Together, we will be stronger!

 

Financial Information and Stewardship

The MGFA meets all of the standards of BBB Wise Giving Alliance, Community Health Charities, and the National Health Council, and is a careful steward of donations received. In 2018, seventy-two percent (72%) of every dollar donated went to support MGFA programs.

The MGFA is generously supported by donations from individuals, Walkers and Walk Teams, charitable organizations and others. For more detailed financial information, please see the MGFA’s latest annual report, audit and Form 990, on our website at www.myasthenia.org.

 

Information You Can Trust

There is much information available today on the Internet on nearly every subject, but it is often hard to sort out truth from fiction.  Information published by MGFA has been reviewed (and often written) by top experts in MG.  The organization’s Medical/Scientific Advisory Board is a collective of more than 150 of the top MG clinicians and scientists in MG in the world.   Twenty nurses also serve on the MGFA Nurses Advisory Board.  Members of these groups volunteer their time unselfishly, writing and reviewing articles and brochures, organizing curricula and speaking at programs and conferences, and advising on research funding decisions.  They are on call to help MGFA staff respond to complex questions from the MG Community.  It is reassuring to know that information you get from MGFA is supported by the knowledge and expertise of these clinicians and scientists. 

 

 

© Myasthenia Gravis Foundation of America, Inc.

Revised October 2019

 

Myasthenia Gravis Foundation of America

355 Lexington Avenue

15^th Floor

New York, NY 10017

1-800-541-5454

mgfa@Myasthenia.org

www.Myasthenia.org