Come and join us for the 2018 Connecticut MG Walk as we continue taking “steps” 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!
It was only 5 years ago that Ed started to develop the symptoms that would lead to his MG diagnosis. In late January of 2013, he had been having problems breathing and problems with his speech. As Ed puts it, he sounded like “Donald Duck on helium”. It was at first thought that he had a stroke, but after a few days in the hospital, it was determined that he actually had myasthenia gravis. He was started on IVIG, but it turns out he was actually allergic to the treatment and could not continue on that route. He did two rounds of plasmapheresis before being released from the hospital, but his symptoms only got worse from that point on. He continued to have speech problems and issues with his breathing, and soon he was having difficulty walking as well. He was referred to Dr. Goldstein at Yale New Haven Hospital about 12 days after being released from the initial hospital. After an examination by Dr. Goldstein, he was immediately admitted to Yale New Haven Hospital. There, a breathing tube was installed and he was placed at Yale New Haven Hospital’s Neurological ICU. He was in myasthenic crisis and was on the breathing tube for13 days and also had plasmapheresis. From Yale New Haven Hospital, he was then moved to Gaylord Rehabilitation where he recovered for about 5 weeks. Once Dr. Goldstein moved to NYC, Ed started to see Dr. Richard Nowak at Yale Neurological who has continued to treat him ever since. Eventually he found he was unable to hav further plasmapheresis, so Dr. Nowak tried IVIG again, from a different manufacturer, however the IVIG did not have optimal results. Ed had been hospitalized three times in sixteen months since his release from Gaylord Rehabilitation. Things were difficult for Ed because of his MG. He then became part of a trial for Soliris which he has been part of for 3.5 years and has had life-changing results. He has regained his ability to walk and talk and has not experienced any substantial issues with his breathing in a long time. Dr. Nowak was his coordinator for the clinical trial and has always been there for Ed.
It was through Dr. Nowak that Ed first got involved with the MG Walk in Connecticut. He unfortunately missed the first Walk due to hospitalization, but he still remained active in the cause. He also got involved in setting up the local support group of which he is now a co-facilitator. It has been a very supportive place and one where Ed knows he is not alone in his journey with MG.
He continues to stay very active with the MG Walk and knows how important it is to be involved in this way. When he was first diagnosed 5 years ago, it seemed that no one really quite understood what MG was, but so much has changed in the past 5 years. As someone who had difficulty finding the right treatment, he knows it’s important for MG patients to have options. Everyone is different and what works for one may not work another, so it’s important to continue raising funds to help drive research forward in finding more treatment options. The Walk has also been a great way to spread awareness about MG, making sure more and more people understand what it is and what those who are living with it go through every day. There may be numerous people out there who have this and don’t even know it, and educating others can lead to quicker diagnoses and better treatment. People who have MG need to know that someone cares about them.
Ed is thrilled to join everyone at the Connecticut MG Walk this year on June 10 and inspire others with his story and commitment to the cause. It is important to keep hope and know that there is help available. You may need to make modifications and pace yourself, but you will feel better and be able to live your best life. “When you try, good things happen!”
His family has been incredibly supportive, including his wife Tina, who unfortunately passed away from health complications 2.5 years ago. His son, Michael has continued to a fantastic support. Ed continues to provide support to others through his great fundraising efforts at the Walk and his amazing work with the support group. He looks forward to walking with everyone on June 10!
Use the following documents to help spread the world to your network and community about the upcoming Connecticut MG Walk!
MG WALK SOCIAL MEDIA BANNER *Coming Soon*
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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: