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 in 1998 that a woman named Carrie Vincent, who had an appointment to see Dr. Meckler of the neurology department at University of Louisville, and decided to give her appointment to Sue. If Carrie hadn’t done that and she hadn’t been able to go to that appointment, Sue says she doesn’t know where she would be to this day. That’s beecause it was that appointment that Dr. Meckler officially diagnosed her with MG. He did a physical exam of her face and reflexes, went over all her other symptoms and the tests that had been conducted, and came to the official MG diagnosis. One year later, it was discovered that her thymus gland was double the size it should be, and so she underwent a thymectomy. After that, she enjoyed almost 9 years in remission, but in the summer of 2011, while getting ready to attend her cousin’s 40th birthday party, she noticed a drop in her face and her speech starting to slur again. She immediately knew it was back, but went to the party, and the next day saw Dr. Meckler’s son in the practice who confirmed the MG was back.
2 years ago, she started IVIG treatment. The first time she was diagnosed, she wasn’t in the hospital all that much, but this second time around has landed her in the hospital many times. The IVIG treatments also caused 30 lbs of fluid to build up and has led to congestive heart failure for Sue. Luckily, she has remained out of the hospital for over 2 years and, while she can never have IVIG treatment again and her doctor says remission this time around is highly unlikely, she is doing well. Today, she works with Dr. Wong, a neurologist at the University of Louisville, as well as with her primary care physician to complete blood work every 3 months and treat the MG.
About 5-6 years ago, Sue’s cousin introduced her to Beth Martin, another patient of MG, through social media. Beth was having a fundraiser with the money raised going to support the MGFA, and Sue wanted to be involved in whatever way she could to help raise money towards a cure for this disease. In the last few years, she has conducted fundraising nights with Dairy Queen where 10% of sales from a night goes towards her fundraising, and has been sponsored by her boyfriend’s company, JJ Pallet by having their team shirts made and by donating to the cause. In addition, she has sold homemade peanut butter fudge and conducted raffles at bingo nights, and before the MG Walk came to Kentucky, she created her own 3 mile fundraising Walk in Bernheim Forest that raised a little over $900 the first year. Now, she participates and fundraises for the MG Walk in Kentucky every year and has raised almost $2,100 in just 2 years.
She is excited to be the Local MG Walk Hero this year and excited to continue meeting others going through their own journeys with myasthenia gravis. She can’t wait to see how the research will continue to progress and hopes one day there will be a cure found.
This year, she will be walking with her very supportive family, consisting of her boyfriend of 26 years, James, her daughter, her mom, and her nephew home from the Marines. Beth Martin will also be at the Walk as well with her teal MG car, reupholstered specifically for the event.
To impart words of wisdom to those going through their own diagnoses, Sue says to keep up with your doctors’ appointments and listen and work with your doctors because every day is different and every case is different. Despite all she has been through, Sue has never let her MG or any disabilities slow her down or keep her from doing what she wants to do and living a normal life.
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: