COME TOGETHER TO SUPPORT THE TALLAHASSEE MG COMMUNITY… The MG Walk isn’t really about walking — it’s about supporting the MG community, and we need YOU to make that happen. MG is a rare and chronic neuromuscular autoimmune disease affecting tens of thousands of people. When you come together with friends and family to walk in your community, you give hope to everyone impacted by MG. Money raised from the MG Walk funds research towards better treatments, bringing us closer to a cure, and supports services for those living with MG. That’s why we join forces at this event—walking or not—supporting each other 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!
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SPREAD THE WORD!
Use the following documents to help spread the word to your network and community about the upcoming MG Walk!
“Hi everyone! My name is Cassie Hurst. I am a wife, teacher, Dalmation Mom, and MG patient. MG does not define me, but is a part of me.
Before becoming ill, I was an avid jogger and ran 4-5 days a week. You would often see me running 5ks on the weekends, I was bubbly, had an unending amount of energy, and had just completed my first half marathon in February of 2017.In November of 2017 I became sick with a horrible cold, after many months I was continuing to have breathing issues and a horrible cough. I was then having unexplained weakness in many of my muscles. I thought I was just “still getting over being sick” and brushed it off.
I was unable to open a water bottle, I was having a hard time breathing or getting full breaths, my legs were weak and some days I could hardly walk, one of my eyes would slightly close, I was experiencing severe fatigue (sleeping for obnoxious amounts of time and still feeling tired), was experiencing unexplained chest pain, rapid heart rates, and was no longer able to exercise. I saw several doctors in Tallahassee to no avail.
To most I “looked” like a normal 28 year old girl. I was passed from doctor to specialist as no one knew what was wrong or what to do with me.
I was at the end of my rope and for months had no answers. This was the most hopeless and helpless I have ever felt.
My PCP then sent me to Shands. I was immediately seen by their cardiac thoracic surgeon and he suspected MG . He referred me to Dr. Nivedita Jerath (the most amazing neurologist there is). She was practicing at Shands at the time.
Dr. Jerath was a godsend. She listened to me, my symptoms, what was happening, looked at the HUNDREDS of pages of records, tests, and blood work I had done.
Dr. Jerath did a thorough physical exam on me and then proceeded to do a repetitive nerve stimulation test.
Long story short, I was told you either have MG, CMS, or ALS.
Tears of relief, joy, and sadness filled my eyes. I felt like a weight had been lifted, but at the same time realized my life would never be the same. I wasn’t even 30 yet. This was a hard thing to accept.
Dr. Jerath immediately started me on Mestinon(as she was hoping it would help my muscle weakness and fatigue).
After testing and a Mestinon trial I was classified as having seronegative Myasthenia Gravis. MG is rare, but being seronegative is even more rare.I was then seen by a cardiac thoracic surgeon at Shands Dr. Machucha (an amazing surgeon that has helped give me my life back as well) . He recommended a robotic thymectomy to try and help my debilitating symptoms of MG.
I proceeded with the surgery and received a robotic thymectomy in December of 2018.
This surgery along with the care of Dr. Jerath and Dr. Machuca gave me hope. Hope I so desperately needed.Since surgery, I have improved along with the treatment plan Dr. Jerath has me on.I am JUST now starting to exercise, walk, and jog again. No running yet, but praying to get there one day.This journey I’ve been on has been humbling and sobering in the fact that I’ve had to ask my husband and family for help. Help with simple things such as keeping my balance, walking, grabbing my hand, helping me brush my hair, feed me, etc.(when I was at my worst).But I am currently stable and am on Mestinon time release medicine along with 60mg Mestinon as needed. I also receive PT and am on various vitamins and supplements. My coloring is back, energy is better, and I am enjoying life!My journey with MG has taught me many things-it has taught me to be thankful for each day I am given as life is precious and time is not promised, being kind to others no matter what -as you never know what someone is living with daily behind a smile, and serving others wholeheartedly.I am honored to share my story! I will continue to advocate for myself and fellow MG patients, strive to
raise awareness about MG, and will continue to fight until we have 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 and 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: