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!
I can’t say exactly when things began to change. There were days when I didn’t feel well but could not explain it. I would be fine when I woke up and headed to work, but by lunchtime my throat seemed tight. As the months progressed, my throat was tightening more often – sometimes several times a day – usually after long telephone conversations or meetings. I worked at a small law firm and spent a substantial part of my day meeting and speaking with clients, so I attributed it to a busy or stressful day. As the tightness increased, I began having difficulty swallowing and my speech was becoming slurred. When work ended, I would go home and head directly to bed because I could not talk or swallow. Rest seemed to improve my symptoms.
The next several years were spent visiting various doctors and undergoing many tests trying to find answers as my health deteriorated. I was no longer able to eat solid food after breakfast and lost more than 50 pounds. Five years later, I was sent to a neurologist because I had had a seizure. The seizure turned out to be a blessing because the neurologist knew exactly what I had – Myasthenia Gravis. He performed a tensilon test (which is rarely used today) and ordered some blood work that confirmed his diagnosis.
At the present time, my MG is stable with appropriate medications. This journey has had its ups and downs. I have experienced weakness in other area since my initial symptoms and medications have been adjusted many, many times before finding the ones that work best for me. I have had a Thymectomy, plasma pheresis and IVIG, and I am thankful for having neurologists who were knowledgeable and caring, especially my current physician Dr. Michael D. Weiss at the University of Washington.
When I was diagnosed, there were no local support groups in the area (RI). My sister lived in the Seattle area and found the number for the Pacific Northwest Chapter in the phone book and called them. I received support and information over the years from Marian Forschler and from the MGFA. My husband, Ray and I moved to WA in late 2004, and I was able to meet the person who had given me telephone support for many years.
In 2007, I became involved with the former Pacific Northwest Chapter serving on the Chapter’s Board of Directors and as Chapter Secretary until 2015. During that period I was responsible for speaking with newly diagnosed patients and providing them information and medical referrals, assisting with the newsletter and planning annual events for support groups. In 2010, when the Chapter founder became ill, I assumed a more active role with patient services, chapter administration, mailings, answering emails and support groups. Since 2010, Ray and I have co-facilitated support groups in Washington and have been able to expand the number of groups from 2 to 4. In 2014 were able to start a support group in the Portland, Oregon area as well. We have also have been actively involved with the MG Walks since 2011.
As the MG Walk Hero, I hope to continue to spread awareness with patients and especially with the community. I am always happy to speak with patients and their families and offer information and support. I encourage them to come to a support group meeting where they can meet others with MG. This is a wonderful place to meet and talk with others so they do not feel like they are dealing with this disease alone. The MGFA is a great resource, and I always tell patients to visit the website which is a wealth of information and where they can view videos, podcasts and patient stories. I encourage them to complete the MG Patient Registry – there is power in numbers! I also encourage everyone that I speak with to join us for the MG Walks. These Walks are an amazing place to meet others with MG and have fun while raising money and awareness. Someday there will be a cure for MG but in the meantime – Together We Are Stronger!
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: