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!
Arlene does not have MG herself, but for the past 11 years, she has had to watch how this illness has affected her father, Joe. 11 years ago, Joe was starting to experience many of the classic ocular symptoms of MG. He had double vision and a droopy eyelid that he tried to keep up by using a band-aid. Because Joe had Bell’s Palsy in the past, some doctors attributed his symptoms to that, and it took many doctors to discover that he really had MG. Some doctors initially believed that Joe had only ocular MG and would be fine by just taking a pill every day. That worked well enough for about 3 years, until Joe had to go in for back surgery and was put on a medication to relieve a bladder infection that set off his myasthenia gravis. Doctors expected that he would be fine, but Joe only got worse and worse and ended up in a myasthenic crisis. He was in a hospital for 4 days in Fresno, California and eventually transferred to Stanford Medical Center… where he coded within 10 minutes of his arrival. Joe also coded a second time when he was given too much Mestinon.
As a daughter watching over her father, Arlene has had to become very educated on the disease and the different ways her father is affected. Today, Joe is 90, and so Arlene takes great care in keeping him in the best possible health and keeping his attitude positive. Arlene never allows him to go to any doctor’s appointment or take any medicine without first checking resources on the MGFA website to make sure nothing will affect him negatively. She knows how frustrating it can be to visit doctors that aren’t familiar with your loved one’s rare disease. And it’s a big reason she gets involved with the Walk. Arlene wants to educate the medical community and others about MG and the special things you need to know (such as what medications work well with MG and which don’t) and to make sure you or your loved one is diagnosed as early as possible and provided the best treatment.
Today, Joe’s care is monitored by Dr. Day who has changed his medications and seen good results. Joe is still a farmer and still drives his tractors. And a month ago, he became a very proud great grandfather!
Arlene and her family did the Walk for the first time 3 years ago, while Joe was still recovering in rehab, and they met so many wonderful people. The Walk was the first time Arlene never felt so alone in dealing with MG. Joe participated the following year in the MG Walk by riding his motorized cart. That year, he made a promise that he would walk at the next year’s MG Walk. The next year, Joe kept his promise and walked the last few yards across the finish line.
Arlene’s team, “Not Your Average Joe” will be back at the Walk again this year with family and friends. Every year, Arlene also makes and sells bracelets to help their fundraising, and this year they hope to raise the most they ever have with a goal of $4,000!
Arlene wants those who are caring for a loved one with MG to be an advocate for those loved ones. Question what is given to your loved one and ask about all the prescriptions. “Is this good for someone with MG?” “Are you familiar with MG?” The MGFA is a fantastic website and resource to help ensure you have educated conversations and learn the answers to your questions. Always stay positive, and let’s keep working together to find a cure!
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: