THANK YOU FOR JOINING US AT THE 2017 NEW ENGLAND 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!

Check out photos from the event and relive the memories of a great Walk!

PLEASE NOTE: In order to view the most “up to date” fundraising totals on this page, please refresh your browser (or hit ctrl+F5). Thank you!


We are thrilled to announce the 2017 New England MG Walk Hero is…Amanda Jones!
 


It was back in 2011 that Amanda can remember her journey with MG starting, though looking back, the symptoms probably started much earlier than that. The symptoms all started gradually: first a feeling of constantly trembling, then painful acid reflux, though nothing got better after seeing her doctor. Soon she would choke when she swallowed, her voice started to change where it became hard to understand her, and her face and smile started to look different as well. Once the double vision started, she knew there was something physically wrong. When she told her eye doctor the symptoms she was experiencing, her doctor cancelled all her appointments, and spent 3 hours with Amanda running tests. She had her suspicions, but didn’t want to say anything til Amanda saw a neurologist. She went to see a neurologist who ran some test. When they all came back normal, she was told it was all anxiety related and therapy would be the next best step for her. Not accepting this, Amanda saw another neurologist, one her eye doctor actually trusted more, and after a simple evaluation, he diagnosed her with MG. From there a neuromuscular specialist confirmed the diagnosis was actually Musk MG, and when she eventually decided to see Dr. Weinberg in Boston who she had seen on an MG panel in Boston, he confirmed the diagnosis. Amanda wanted to do everything she could to help her body heal by vitamins and healthy food for the first 18 months of her diagnosis. She was very weary of the the medications and treatments brought forth to her, but her symptoms only got worse. Seeing how unhealthy she looked, her doctors had real concerns about her health and Amanda said she would give IVIG  a try. Eventually she went on Cellcept, and when Rituxan was showing great chance for remission, she was referred to Dr. Nowak to complete that round. After a hard first go of it, Amanda has completed her first full round of Rituxin and is hopeful for a complete, long term remission and to be fully off Cellcept.

When she was first diagnosed, she did a lot of research, but became terrified of the negative stories she read. She knew how important it was for people in the MG Community to look positively on their life. She started a group called Myasthenia Positive Vibes (which is also on Facebook) that focuses on what people can do, not what they can’t do. They celebrate the wins in their lives, no matter how big or how small. If all you did was go for a walk today, at least you went for a walk, and that’s a good thing!

She continues to bring this energy and passion to the MG Walk in New England, where she has participated for 3 years, 2017 being her fourth. As the MG Walk Hero, she wants to inspire people living with MG to find positivity. There is so much hope out there for MG patients and she wants to make sure people never lost that hope. She continues to raise funds to help all those in the MG Community and the medical community. It is important for people to be aware and educated, especially so it doesn’t take so long for doctors to diagnose someone with MG. She will continue to raise funds for the ultimate goal of finding a cure for MG, and is looking forward to walking this year with all those in New England looking to do the same!


Meet our 2017 New England MG Walk Medical Chair…Dr. Amanda Guidon!
 

 

Dr. Amanda Guidon is an Instructor of Neurology at Harvard Medical School and a neuromuscular specialist at the Massachusetts General Hospital, where she directs the myasthenia gravis clinic. After completing her neurology residency and neuromuscular fellowships at Duke, she joined the faculty at MGH in 2013. She is board certified in neurology, and neuromuscular and electrodiagnostic medicine.  Dr. Guidon serves as a member of the medical and scientific advisory board of the Myasthenia Gravis Foundation of America (MGFA) and the Myasthenia Gravis Association of New England (MGANE). She participates in clinical trials and multi-center research projects in myasthenia.


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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Pope John Paul II Park, Boston, MA

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Pope John Paul II Park, Boston, MA 42.280222, -71.046073

 

Thank you to our sponsors!
 

Goal: $35,000
100 percent raised
$42,170 raised so far
in New England
CONGRATULATIONS!

Updates

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.