Myasthenia Gravis Foundation of America, Inc.

Announcement! Late-breaking abstracts are now being accepted for the MGFA 15th International Conference on Myasthenia Gravis and Related Disorders. Late-breaking abstracts must have key aspects of research conducted after the original November 15, 2024 abstract submission deadline. These abstracts must be new and of sufficient scientific importance to warrant expedited presentation and publication and contain timely, significant, and innovative content. Case reports are not acceptable submissions and will not be considered. For more information and to submit a late-breaking abstract, visit https://lnkd.in/dmgbRH6U.

This was a monumental year for the MGFA for many reasons. Thank you for being by our side through it all. This year we were able to: • Reach thousands of MG patients and provide critical, lifesaving educational resources. • Dedicate more than $1 million to research initiatives to get us closer to a world without MG. • Host in-person and virtual events to create deep, meaningful connections in the community. • Provide 1:1 support to hundreds of patients who need it most. We could do this -- and more -- because of supporters like you. As we look ahead to the new year, we are excited about the extraordinary work ahead. It's not too late to make a tax-deductible gift in 2024. Your investment fuels our important work. Make a gift online before midnight: https://lnkd.in/ey_kiJU4 We send you the warmest wishes this New Year’s Eve and look forward to what’s next in 2025.

MGFA has announced a relocation and date change for the 2025 National Patient Conference. The event will now take place at the Arizona Grand Resort and Spa in Phoenix, Arizona, from Sunday, March 30, to Tuesday, April 1, 2025. The decision to move and reschedule the conference was made with the safety, accessibility, and comfort of our attendees as our top priorities. Expanded attendance, which exceeded our expectations, necessitated a venue better suited to the needs of the MG community. The Arizona Grand Resort and Spa offers numerous accessibility features and enhanced amenities to ensure a welcoming and accommodating experience for all. Find out more and register for the conference on our event page: https://ow.ly/aCKN50UutwE

You can learn more about the latest clinical research on #myastheniagravis presented at the 2024 American Academy of Neurology Annual Meeting. This CME activity is hosted by Nicholas Silvestri, MD, a MGFA's Medical & Scientific Advisory Council member. https://lnkd.in/g_A4_k7G

Join our webinar to learn what changes are on the horizon for the Medicare Part D program in 2025. Amy Niles at the PAN Foundation will walk you through two changes, including an annual out-of-pocket cap for prescription medication costs and the new Medicare Prescription Payment Plan. These changes will be helpful to millions living with chronic & rare diseases. https://ow.ly/i0RK50UqEhO

#RareDiseaseDay 🌍💜 is a global movement shining a light on rare medical journeys. Held every year on the last day of February, it’s coming up on Feb 28, 2025! As the official U.S. partner for Rare Disease Day, the National Organization for Rare Disorders (NORD) invites you to kick off the countdown to the celebration with us. RSVP for next week's webinar to learn how you can #ShowYourStripes in support of everyone with a #RareDisease: https://bit.ly/4f8HI9n 🦓 #RareDiseases #Healthcare #Medicine #Disability #Disabilities #Health #RareDiseaseAwareness

MG investigators recently received MGFA funding to conduct and publish research using patient-reported data from the MGFA Global MG Patient Registry. Read more about their projects: https://ow.ly/l5nj50UmsKP

It was November 2021. I was onstage in New York City, delivering a lecture to hundreds of people. During my speech, my voice began warbling. By the end, I could barely get words out of my mouth. A month or so later, after symptoms expanded to include eye strain, clogged ears, and difficulties swallowing, my primary physician recommended a blood test, which confirmed his suspicions: I had myasthenia gravis. Little did I know how much my life would change. Over the next 18 months, I endured countless neurologist appointments, blood draws, and hospital visits. I lost 35 pounds, struggled to read to my daughters, and nearly drowned in a lake due to upper-body weakness. Things hit rock bottom in April 2023 when I choked on a smoothie, went to the ER, and ended up in the ICU, intubated, unable to breathe on my own. Following my crisis, powerful new medications helped stabilize my symptoms. I slowly returned to running, a midlife hobby I’d taken up during the pandemic. This past May, at the tender age of 50, I completed my first-ever marathon, shedding many tears at the finish line. I will not let MG defeat me, and this motivation powered my run. My turnaround would have never been possible without the education and community support provided by the Myasthenia Gravis Foundation of America and without the many scientists who study MG in search of a cure. If you or someone you love is struggling with a diagnosis or any of the daily challenges myasthenia gravis can bring, this community is here for you – to empower you though education, to lift you up through difficult times, and to help you reach your goals, however big or small. Join me today in making a donation to support those living with myasthenia gravis and their families. Thank you for making a difference – for me and for all those living with MG. - Dan Rollman Executive Coach, Donor, and MG Patient Make a gift at https://ow.ly/2S9r50UlUUJ

When Betty was diagnosed with MG, her world turned upside down. But she wasn’t the only one. MG also affected her family. Her husband and children became her care partners. They helped her manage her medication and treatment schedules, carried her up the stairs when she was too weak to walk, and carried the emotional load of worrying about whether Betty would be okay. Learn more about their journey in our video. MG requires sacrifices from so many of those surrounding a loved one with the disease. And just like a person living with an “invisible illness” like MG, care partners often carry a burden that’s invisible to those on the outside. November is National Family Caregiver Appreciation Month, a time to shine a light on the vital role that caregivers play. We invite you to honor a care partner with a donation to the Myasthenia Gravis Foundation of America. Make your gift today or on #GivingTuesday (December 3), when gifts will be doubled through a match challenge. MGFA supports and empowers all those impacted by MG. We honor the journey that caregivers walk alongside their loved one, and together we fight for a world without MG. https://lnkd.in/ey_kiJU4

Sometimes it's hard to find gratitude in the face of a difficult diagnosis. But finding positives in a painful or difficult situation can help you find strength and a brighter outlook for the future. We are grateful for the community that stands #MGStrong together, to support one another, fight for better treatments and improved quality of life, and raise awareness about MG in locations around the world. You inspire us to keep going every day in service of our important mission. What are you thankful for?