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 Team 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!
Their journeys with myasthenia gravis started separately, but once they met, Janet and Julian became a strong team in the fight against MG.
Janet first started to experience symptoms midway through 1996 when she had a two week episode of double vision. She didn’t know at the time that this would be the start to her journey with MG, but six months later, she had an upper respiratory infection, generalized weakness, and started to have difficulties with chewing, swallowing, breathing, and the use of her arms and legs. These symptoms led to a rather quick diagnosis of MG and she was started on various treatment, including having a thymectomy in July of that year. Wanting to know everything she could about her condition and upcoming surgery, she and her husband Jim took to the internet and discovered the MGFA. Attending a support group was one of the best things Janet could have done, as she met others living with MG, spoke with people who had their own thymectomies and were living their best lives after. She got super involved in driving the cause forward eventually co-chairing the support group, getting involved with the Maryland, DC, and Delaware MG Communities and was soon appointed to the national board of directors which she has served on for 7 years. Eventually, Janet and Jim left the northeast and moved further south to the South Carolina where she met Julian Carnes.
Julian’s journey with MG started much later, about 10 years ago. He was having issues with his balance and difficulties climbing a ladder, which was a huge cause for concern as he was working for a construction company at the time. Soon his symptoms progressed to difficulty swallowing and so Julian started to seek an answer to what was going on. After being hooked up to a feeding tube, he was given all the normal tests and was soon diagnosed with MG. He was put on different treatments but soon developed DVT in both legs and a pulmonary embolism in both lungs that hospitalized him in the ICU for 65 days and a 100 day stay at a rehab center. A very rough beginning, Julian’s physical condition is much better. It was by chance that he met Janet Myder at a book club his wife had joined. Inquiring about her medical bracelet, he learned she as well had MG. As they talked about the need for a support group in the area, it didn’t take long for this dynamic duo to get it all together and a month later they were up and running.
Janet and Julian have co-facilitated the Low Country SC Myasthenia Gravis Support Group (which meets every third Saturday of the month at East Cooper Medical Center in Mount Pleasant) ever since, making sure that those out there living with MG have access to the resources they need, are educated about their MG, and above all, never feel alone. Both have also been very active in the MG Walk and raising funds to continue driving forward the mission of the MGFA and keep helping to fund research for better treatments and resources for the MG Community.
When asked what advice they have for those going through their own journeys with MG, both immediately said “It’s not the end of the world.” Be sure to learn everything you can about MG and be your own advocate. Seek out the resources and support that is available and know that the MGFA is there and looking out for you. Your life may have changed, but you can still learn to live your best life possible.
She is on the Medical and Scientific Advisory Board for the Myasthenia Gravis Foundation of America, and will be joining the MGFA Board of Directors in March 2017. She is interested in not only treating MG, but also helping patients cope with chronic illness and raising awareness.
Use the following documents to help spread the world to your network and community about the upcoming South Carolina MG Walk!
MG WALK SOCIAL MEDIA BANNER *Coming Soon*
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
If you have questions or want to know more, contact us today:
Checks should be mailed to: