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!
At the Arizona MG Walk 2 years ago, we honored twin sisters (actually they’re triplets along with their brother) Cameron and Peyton Emens, who both were diagnosed with MG when they were just 2 years old. This year, we are learning more from the perspective of a caregiver and parent of young children living with myasthenia gravis from Cameron and Peyton’s mother, Jamee Emens.
The diagnosis of MG first started when Jamee noticed her 2 year old daughter, Cameron’s right eye was wandering. Originally this didn’t alarm her, as Jamee herself had gone through surgery at 2 years old for crossed eyes, and thought this could be a similar case. To be sure, she made an appointment with an ophthalmologist who found nothing wrong with Cameron’s vision, but did notice something resembling a tumor on the third ventricle of her brain. An MRI at the hospital showed no tumor, but it meant they didn’t know what it was. It was very concerning at this point, because Cameron’s eyes were almost completely shut and unable to open them. After 9 days in the hospital, doctors still couldn’t figure out a diagnosis, but Cameron was getting worse; mumbling and tripping as she walked. They eventually saw a neurologist who thought MG, but had never seen it in a 2 year old before. A Tensilon test confirmed the MG diagnosis. 6 months later, after being reassured the disease was not genetic, Cameron’s identical twin sister, Peyton was diagnosed as well with myasthenia gravis.
It’s extremely difficult to see your children sick, but Jamee was there every step of the way for her children. She knows that when it’s your child, you really need to step back and do whatever it is you need to do to help them. She’s been very active with the MG Walks, ever since the very first one took place in Arizona in 2011. It was at that Walk that she was able to bring a big group together, spoke about her kids and their diagnosis, and was truly inspired to keep fighting for this cause.
Since their MG diagnosis, both children have had to deal with multiple diagnoses of other disease such as Type 1 diabetes, Graves disease, Vitiligo (a skin coloration), and Hashimoto disease (a thyroid disorder). As the MG Walk Hero, Jamee wants people to come together and take on these different autoimmune diseases. She’s a big advocate that if we cure one, we open the door to curing them all. She also makes sure to talk with other parents who have children living with MG as it is very important to support one another.
For a long while now, MG hasn’t been causing nearly as many problems as it had in the past for Cameron and Peyton, and they have also started to become advocates for the other diseases they are living with. Cameron went through what is called Frontalis Suspension a few years back, which means they removed the muscle in her eyelid and attached it to her eyebrow, and her eyebrow is how she opens and closes her eyes. Unfortunately, this snapped, which was a very real reminder that her MG is still present, and the whole family wanted to come back to the Walk this year and continue raising important funds for the MGFA and all those affected by MG.
The whole Emens Family will be back for the 6th Annual MG Walk in Arizona on December 4. As a parent of children living with MG, Jamee says “You just want your kids to be healthy. Nothing else matters. When they are sick, that’s when you really realize nothing else matters. But, I’ve never let their disease limit them. You want them to be able to be a regular kid. There are some limitations physically, but you need to focus on allowing your kids to have fun and live their 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: