It was a great day of awareness, fundraising for important resources for those living with MG, and such great support in the MG Community. Keep the momentum going! All fundraising pages will remain open through December, so there is still time to reach all of our goals. Reach out to your family, friends, and coworkers and tell them all about your great experience at the walk (be sure to show them all the photos!), and encourage them to support you. Follow up and thank all those that did donate, and please contact the MG Walk Office for any tips on post-event fundraising.
Thank you all for an amazing day, a great event, and for coming together and doing all we can to reach the ultimate finish line…a world without myasthenia gravis!
It was less than 10 years ago that Laura recalls experiencing her first MG symptoms. Her vision had been blurry on and off and she attributed this to a need for a new eye glass prescription, something she’d take care of soon enough. However on a drive back to Maryland from North Carolina, she experienced double vision and had to drive home with one eye closed. Unknown to Laura, this was the start of what would be an eight month journey of confusion and fear as she went through the arduous diagnosis nightmare that many MG patients have experienced. Tests done by her primary care and neurologist did not indicate MG as they suspected and other specialists she was referred to had differing opinions. Further complicating the diagnosis process, was the fact that her symptoms would present one week and be totally gone the next. Of this period, Laura recalls the desperation with which she hoped her family and healthcare providers would believe her even as she questioned her own self. It was not until she reached MG crisis that doctors were able to make a confident diagnosis.
Upon being diagnosed, she faced her next hurdle; treatment. Her neurologist could not manage her MG and was not comfortable maintaining the high doses of steroids he’d prescribed. He recommended finding and MG specialist and she found Dr. Macko. Her first appointment with Dr. Macko lasted over an hour, but Laura remembers thinking she might be ok after all. Dr Macko slowly managed to bring her highly sympotomatic MG under control, and equally importantly led her to MGFA initiated support groups in the area. A week after her visit she received a packet in the mail full of resources that are a treasure to a newly diagnosed patient.
For many years, Laura’s MG was well managed with medication and save for a few “somewhat bearable” lifestyle changes she was sure she could put the nightmare of MG behind her. In 2013, she had her first major relapse. Six months later, still unable to be fully independent, the reality of “no cure” began to sink in. It was a painful reality and Laura resolved to proactively seek help in dealing with her MG for the long term, and knew that she needed to get as much education and community support as she could. She attended some support group meetings, did a lot of research, and at the encouragement of her neurologist, attended the MGFA annual conference in 2014.
Laura believes that the role of the MGFA in creating and sustaining a community of MG patients, providers and caregivers cannot be underscored. “It was quite an experience to meet and share with other patients my age going through the same struggles and fears and watching them succeed. MG can sometimes be completely overwhelming and I realized I’m not the only person trying to build a life with this disease. I learned a lot in terms of coping techniques, work-life balance, safe travel and nutrition from other patients, says Laura. It was a great decision to attend the conference. ” It was at this point that Laura decided she needed to do something to support both herself and others affected by MG. Back to the MGFA site she went, looking for volunteer opportunities, and found the MG Walk. This has proven to be a great way for Laura to involve herself and her family and friends in progressing the cause of the MGFA and raising MG awareness. She has found the MG walk day to be a fun day where her friends and family come out, show solidarity and meet other MG patients and caregivers.
As the Maryland MG Walk Hero, Laura hopes to reach others living with MG and encouraging them to “live their best life”. She hopes to inspire others to not only seek out information on myasthenia gravis, but also to be a resource, especially to those being diagnosed for the first time and just learning of this new disorder. The diagnosis of MG, as difficult as it may be, is really not the end to life and with resilience and support, it is possible to find fulfillment despite the limitations MG creates. However, MG is a journey and what better partner to have along for the ride than the community and resources provided by the MGFA? She hopes to inspire others and is excited to join everyone at the Maryland MG Walk, together making positive steps towards a world without MG!
University of Maryland, School of Medicine
Department of Neurology
Johns Hopkins University Medicine
Department of Neurology
Not sure where to begin? Check out our fundraising tools to help you raise MG awareness and increase your fundraising!
On MG Walk Day, we gather to celebrate those we love who live with MG, commemorate the research we’ve helped to develop with funds raised!
Share your fundraising page and links to donate via email and on your social media accounts. If you have checks or cash funds to turn in, please let us know and we can help you add them to your fundraising page. Checks may be mailed to the address below. Please be sure you’ve written your team name in the memo field!
MG Walk Office
1707 N. Randall Rd, Suite 200
Elgin, IL 60123
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