Myasthenia Gravis Insights

This week's must-know community updates, latest research & events

March 05, 2025

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Latest Research

In a recent case, Santarosa & Cartwright (2025) reported on a 4-year-old girl with a rare subtype of an autoimmune disorder, treated with a medication called rituximab. This young patient is one of the youngest documented cases to receive this treatment for her condition. Typically, this disorder is managed with other medications and therapies, but this girl's treatment with rituximab led to favorable outcomes, suggesting it could be a safe and effective option for children with this condition.

The significance of this case lies in the successful use of rituximab, which is not commonly used for such young patients. The girl's positive response to the treatment indicates that rituximab could be considered for similar cases in the future. The findings by Santarosa & Cartwright highlight the potential for expanding treatment options for pediatric patients with this autoimmune disorder, which often resists conventional treatments.

Community News

Myasthenia Gravis UnmaskedMar 04, 2025

“You are worth the fight, the time, the unconditional love that is tested and strained by illness.

You are worth the "inconvenience" of chronic health issues that crop up at the worst time, of the tears and fears chronic illness can bring, the missed events and fitful nights where you wonder if this fight is worth it all.

You are worth being held every time you cry. You are worth fighting for good care, for compassionate medicine.

You are worth the quiet love during the days spent in the bed when all you can do is "just make it".

You are worth being called beautiful in spite of the dirty, messy hair, the wrinkled, baggy sweats and red rimmed eyes.

You are worth the loyalty of friends and family who extend you grace every day, meet you where you are and never make you feel less than for what you cannot control.

You are worth the dignity of receiving the help you need to dress, bathe, go out, see the doctor, get medicine and a million other things that often make you feel like a burden, when in reality, they are golden opportunities for you to be cherished.

You are worth it all.”

- Rebekah Dorr

MG Foundation of America, IncFeb 28, 2025

Yesterday MGFA participated in a Rare Disease Day event at Alexion Pharmaceuticals’ s office in Boston. MGFA’s president and CEO Samantha Masterson and Global Vice President for Marketing and Communications Michael Antonellis joined Alexion leadership and other staff in the Rare Disease Day Seaport Walk to raise awareness of the 300 million people living globally with a rare disease.

We are grateful for Alexion’s partnership and humbled to be named Rare Disease Day Patient Advocacy Organization of the Year at this event. Thank you to Alexion for recognizing and acknowledging the MGFA's work on behalf of people living with myasthenia gravis and their loved ones.

Myasthenia Gravis AssociationFeb 28, 2025

🌎💙 Today, we stand in solidarity with the rare disease community for #RareDiseaseDay! Together, we raise awareness, amplify voices, and advocate for better care and research. Every story matters. Every voice counts. #MyastheniaGravis#MGStrong#RareButNotAlone 💪✨

For more information: rarediseaseday.org

[email protected]

www.mgakc.org