Come and join us for the 2017 North Carolina MG Walk as we continue taking “steps” toward the ultimate finish line…a world without Myasthenia Gravis! Register now to join an existing team, or to start and Captain your own!
All that’s left after that is to create and customize your FREE personal fundraising page, share your connection to Myasthenia Gravis and start fundraising!
It was a year and a half ago that Ray and Josette Trapp first heard of myasthenia gravis. Their 3 year old daughter, Alexandria had a droopy eyelid, that they both didn’t think much about, citing it to the number of things it could be: allergies, something in her eye, etc. They figured it would eventually subside, but when it still hadn’t a few days later, they made an appointment with the pediatrician. Most everything seemed to be in order, but coming up with ideas on what this could be, the doctor posed MG. She sent them to an eye doctor to be rule anything else out, but Alexandria didn’t have any ocular damage or other issues. This doctor seconded that it was most likely being caused by MG, and sent the family to be tested. A test where blood needed to be drawn was not an easy one for a child of only 3, but the test did come back positive and confirmed the MG diagnosis. After seeing a neurologist, and a few trials to get the right dosage, Alexandria has been doing very well on Mestinon, having no MG incidents since being on it.
Originally told to stay away from the Internet by their doctors to not be overwhelmed or scared by what they could find, eventually you’re going to do some research. After the diagnosis, Josette did that and came across some support groups on Facebook and connected with other parents caring for children with MG. It was through her research that she came across the MG Walk for the first time.
Not too long ago, a local paper had done an article on the family and Alexandria’s journey with MG, and so many people reached out about their own experiences and knowledge of the disease. Knowing that there was one in Raleigh, Ray really felt like a Walk in his town of Greensboro would prove to be very successful. Ray, who is also the elected County Commissioner in Greensboro, has worked to increase the awareness, including setting up a resolution for MG Awareness in town. He also plans to invite other officials to get involved and participate at the Walk, such as county officials and the Mayor of Greensboro. The family wants to raise the most they can, and are aspiring to raise the most anyone has for an MG Walk!
While it’s very hard to have a child with MG, both Ray and Josette state that they know support is crucial and advise other parents of those living with MG to seek that out. It’s important to connect with others who might be going through the same. Having that initial conversation may be hard, but surround your child with love and support. The whole family is excited to get started raising funds and more awareness, and to be a part of the love and support at the North Carolina MG Walk on April 8!
Dr. Vanessa Baute is I’m so honored to be a part of the MG community and this years MG walk! She completed her neurology residency training and then clinical neurophysiology fellowship with a focus on neuromuscular disease at the medical College of Georgia. She will graduate from the integrative medicine fellowship, started by Dr. Andrew Weil, through the university of Arizona in February 2017. She currently has an integrative neurology practice at Wake Forest Medical Center and sees patients with a variety of disorders including Myasthenia Gravis. She enjoy educating patients on how to thrive with this condition.
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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