THANK YOU FOR JOINING US AT THE 2016 PORTLAND MG WALK!

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!

Click here to check out the great photos and relive the memories of a great Walk!


We are thrilled to announce that the 2016 Portland MG Walk Hero is…Julia Naumes!
 

Naumes Graduation Headshot

College is a very busy time for anyone, especially if you are a college athlete, just like Julia Naumes was back in 2011. She participated in a number of sports such as Ultimate Frisbee and the track and field events that really relied on the athlete’s strength: shot put, discus, and the hammer throw. The summer before her junior year, Julia was in training, weight lifting a lot and getting ready for the upcoming track season. She was lifting heavy amounts regularly, but on one particular day, she was about to lift 45 lbs (she normally lifts 3x this amount) and found she couldn’t even lift the bar. Chalking it up to lack of sleep or an off day, she just wrote this off as no big deal at the time. Later that day, she was doing box jumps, and as she went to jump, her right leg did, but the left leg stayed straight. And then, halfway through a lunge workout, she fell over, mid-lunge which had never happened before. All this combined made Julia worried that something could be very wrong. She was about a week or so out from getting ready to study abroad in Ecuador working with people with leprosy and wanted to make sure her body was in top form before the trip. So she went to the University Health Center to get checked out. The nurses and PA’s at the center did a general physical and blood tests that came back clean, but they were afraid Julia was experiencing signs of MS and did not clear her to leave the country. Instead, she was sent to her primary care physician who did similar tests and an MRI that all came back fine. So from here, she was finally sent to a neurologist. He ended up doing his own tests, but didn’t think it was MG at the time as she didn’t have any of the typical eye symptoms. All her symptoms were in her arms and legs. Julia continued to see him for tests for the next 3-4 months, but everything kept coming back with no results. One MRI test showed what the neurologist thought was a tumor on her spinal cord and sent her to a neurosurgeon to have spinal cord surgery with a diagnosis of Tethered Cord Syndrome. At this point, Julia started to experience some of the ocular symptoms and the surgeon knew the original diagnosis was incorrect and suspected it could actually be MG. The surgery was off and she was sent to another neurologist, this time one that specialized in MG, and within a week, Julia had a confirmed diagnosis of myasthenia gravis. All of this was in the span of a few months, and in March 2012, she had a thymectomy. Today, she is on a regimen of medicine, makes sure to get enough sleep, and still leads a healthy life.  After being diagnosed with MG she started playing handball and really adapted the rules so that she could play despite significant mobility deficits. She kept working to improve her skills and now has multiple national collegiate championship wins and has traveled to Arizona, North Carolina, and Minnesota for the National Collegiate Handball Tournament. Although playing sports has been very difficult and often causes an increase on her symptoms, Julia keeps playing as it is a huge part of her identity and helps her cope with her MG.

For the first 2 years of her diagnosis, she didn’t know of anyone else who had this disease. Her family was very understanding, but it was definitely hard being away at school. She had been doing IVIG and on doses of Mestinon after her thymectomy which allowed her to work, study, and even still play sports. Eventually, insurance started to deny her IVIG treatments, and, not wanting to turn to more aggressive therapies, such as steroids, she started to really grow concerned about what to do with her situation. She took to the internet and found Natalie McGill, Kathie Bibeau, and the online support groups. She finally felt like she had someone who she could ask all of her questions to and she received so many helpful resources. They told her about the MGFA and the conference that was being held in San Diego that year. Julia was fortunate enough to receive a scholarship from her university to attend where she met others going through their own journeys with MG. She participated in the Walk and also met Dr. Charlene Macko, which lead to an incredible internship.

Julia started to work with Dr. Macko on a cause very near to her: exercise and MG. They started a new research study on the prevalence of falls with MG and which activities cause the most fear of falling. From there, they published a paper about which exercises can be the most beneficial to those living with MG and another one about to be published on promoting exercise in the home and the safest way to complete them. They even saw the amazing results of their research when they helped give significant independence and movement, through these exercise regimens, back to someone who was wheelchair bound. As someone who has always had exercise as a huge part of her life, Julia is looking to continue to do more research in this area and focus on the exercises that will bring the most function back at various levels of MG.

She continues to stay involved with the MG Walk and will be at the Portland Walk this year with her family. She’s looking to grow her team and the participation and getting local neurologists involved in the Walk as well. As the Local Walk Hero, she wants people to know how important it is to meet others going through MG, to hear their stories, see their support systems, and continue to fundraise and rally to find a cure for this disease. The money raised is so important as research is going to be how we find a cure and improve the quality of life for so many. She will continue to be someone who works hard to help those going through their own diagnosis and fund and conduct research and therapies that are truly making a difference!


Raise awareness and show your support by downloading our NEW MG Walk Twibbon!
 

walk-twibbon


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:
1-855.MG.Walks (1-855.649.2557)
Info@MGWalk.org

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2016 Portland MG Walk

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2016 Portland MG Walk 45.436296, -122.810856

Goal: $20,000
10 percent raised
$0 raised so far
in Portland
$20,000 to go!

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Checks should be mailed to:

MG Walk Office 1707 N. Randall Rd, Suite 200 Elgin, IL 60123
Please include the participant, team, and Walk location in the memo section.