A MESSAGE FROM Amanda
Dear Friends and Colleagues,
June is Myasthenia Gravis Awareness Month. I'm joining up with the McCourt foundation and team MGH Neurology to run the Boston waterfront 5K. We're raising funds to support the MG research program at Mass General Hospital. Specifically, we are aiming to further develop an enduring research infrastructure for MG, seamlessly integrated with clinical care, and managed by a new research access nurse, to expand the impact of our work.
MG is a rare autoimmune neuromuscular disease which affects about 20/100,000 people of all ages and causes skeletal muscle weakness. Most people have never heard of MG when they are diagnosed. Average time from symptom onset to diagnosis unfortunately is still 2 years! Newer therapies hold great potential to minimize the burden from MG if they are accessible and can be given at the right time to patients whose MG will benefit most.
In addition to clinical trials, our research at MGH is focused on care for patients with thymoma, MG after immunotherapy for cancer, and novel outcome measures to better monitor and manage MG remotely.
If you are able to contribute, please consider making a donation. I am striving to raise a minimum total of $1,000 and a goal total of $3,000. Funds raised by runners come directly to our programs from the McCourt Foundation - a longtime partner of MGH neurology.
Any contribution, no matter the size, will be sure to make a difference in the lives of those living with myasthenia. Thank you in advance for your consideration and your support!
Best,
Amanda