Come and join us for the 2017 TriState 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!
When you receive a diagnosis of MG, it affects not only the patient, but the patient’s family and loved ones as well. It’s a hard diagnosis to receive, but when you have an amazing support system, and especially an amazing partner, it can make all the difference. No one knows that more than Charlie and Leni.
Charlie’s journey with MG started when he was experiencing double vision. He went to his eye doctor to get this odd symptom checked out, but was told there was nothing wrong. Soon, however, he started to experience a slurred speech, and very soon after he had difficulty swallowing. This is when Leni started to think the issue could be neurological, and she immediately took to the internet to research what was going on. Charlie went to his internist, who thought right away that he had ocular MG and referred him to a neurologist for more tests. Leni and Charlie had to wait many months for the results to come back, but it was confirmed he had MG. Leni soon met Sue Klinger through a mutual friend who was able to guide them even more through the diagnosis. Sue also leads a support group for those living with MG based in Manhattan. Though he was originally very reluctant to go to a support group, Charlie realized it was absolutely what was needed at the time.
It was also through Sue that Leni and Charlie learned about the MG Walk and decided to get involved and do even more for those living with MG. Originally having about 3 people on their team for the first Walk they participated, the team has now grown so much over the years. Together with Sue, Leni captains the NY Trailblazers for the TriState MG Walk and has raised nearly $80,000 in 4 years!
They have seen a lot of people who have had much harder battles with MG than Charlie and truly believe in the work of the MGFA. Many people don’t have access to the right resources or information and have seen others become depressed and feel hopeless. As participants of the Walk, they now feel something can be done to help others with MG, help educate the public, make sure accurate information and resources are available, and make sure no one feels like they are alone. Support is very key in this journey and Leni and Charlie have been very grateful for the love of their family and friends and for the amazing help they’ve received from their support group.
MG can be very terrifying at first, but there is a lot that can be done to help those with MG regain the life they once had. Leni and Charlie have approached this as a team and it has made all the difference. As the TriState MG Walk heroes, they hope to inspire others to seek guidance and support and to get involved in raising funds that are so critical to grow the MGFA and move the mission forward. Their support for each other has helped them throughout and they want to make sure others in the MG Community receive the support they need.
He earned his medical degree from Brown University and did residency and fellowships at Yale University where he studied MG. For the past four years Dr. Goldstein has been a co-principle investigator on the neuronext trial “Beat MG”, with the objective of finding out the effects and safety of a new use of the drug rituximab in MG patients who are on prednisone. For more information about the study, you can visit https://www.neuronext.org/nn103-rituximab-mg.
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: