On November 4th, 2015, the GBS|CIDP Foundation welcomed almost 400 patients, families, doctors, legislators, and industry partners to celebrate our 35th Anniversary at the beautiful Andrew W. Mellon Auditorium in Washington, DC. We honored Congressman John Garamendi as our Legislator of the Year for his work in advocating for our conditions in Congress. We also introduced the Estelle Benson Volunteer Award, honoring the following individuals for their contributions to our four pillars:
Kassandra Ulrich: Support
Kenneth Gorson, MD: Education
David Cornblath, MD: Research
Stuart Butler: Advocacy
Thank you to all who joined us, and we look forward to making the next 35 years as successful as the first!
If I were asked before April 21, 2009, “What do you see yourself doing in the next 6 years?” I can assure you that fighting and embracing Guillain Barré syndrome was not on the list.
At the time, I was working full-time, our girls had busy schedules, and my husband was busier than all of us. We loved traveling, crafting, and competitive sports. When I slowed down to relax, you would find me in the perennial garden around our property from sunup to sundown.
Just like a southern summer storm that seems to blow in all of a sudden, life as I knew it just stopped! Initially, I felt run down, but it wasn’t that good kind of exhaustion from a perfect workout. It was that lingering fatigue that keeps pulling you down and no matter what you try, your body continues to feel drained.
I finally made an appointment to see my primary physician. I was told to cut back on my daily routine, go to bed earlier and cut out caffeine in the evenings. About three weeks later, I had tingling and numbness in various areas of my body along with severe pain that would interrupt my sleep. I went back to my primary physician a second time. Labs were ordered and I was told to continue reducing my activities, take a multivitamin and add more iron to my diet.
Within 30 days of my initial doctor visit, I had lost 20 pounds and had tingling and numbness all over my body. The pain was so bad I could not sleep. It was definitely something serious. At my third primary physician visit, I was told it might be a thyroid disorder, and that if I got an ultrasound, it would help with the diagnosis. I was given a prescription and told to hold on to it until I spoke with the doctor the next day.
I called my insurance company’s nurse as I was leaving the doctor’s office. She could not believe the ordeal I had experienced and sent me a short list of endocrinologists and neurologists in the Alexandria, Virginia area. The endocrinologist saw me immediately, diagnosed me with Grave’s Disease, and began working to get my thyroid function under control. He also advised me that this was not my only issue and sent me to Inova Mount Vernon Hospital for an EMG. In the middle of my EMG, the procedure was stopped due to the horrific pain it caused me. I was led across the lobby to the ER where I was diagnosed with GBS on April 21, 2009. From April 21, 2009 until somewhere around July 2009, I received approximately 20 IVIG infusions. However, there was still something lingering underneath it all, and that concerned my neurologist, so within the next 9 months I was seen by two additional neurologists and a rheumatologist.
At this point I still had pain, tingling, numbness, and fatigue. I was walking with assistance, but struggling to regain my independence. My doctors were giving up on me, but I was not giving up on myself. I demanded another opinion. I had to advocate for myself. My independence had been taken from me and I needed it back!
I arrived at Johns Hopkins Hospital on April 27, 2010. I was then diagnosed as having a complex neuromuscular disorder, positive neuronal AChR, chronic fatigue, pain, numbness, tingling, and no reflexes. On July 7, 2010 my thyroid was removed, and within 9 months, I began plasmapheresis treatment every other day through April 22, 2011.
It’s been 6 years now, and the tingling, numbness, and pain are a part of my everyday life, but I refuse to slow down. Warmth and massages help me manage the residuals. I have re-engaged in life’s activities with our busy science and tech ninth-grader; she loves having me around more. I substitute teach, volunteer, garden when the mood strikes me, and I spread my smile everywhere! I live by the mottoes “just do it” and “it is what it is.” I am now a GBS|CIDP Foundation Liaison who advocates, educates, and supports those with GBS, CIDP, and other variants. I organize chapter meetings to help patients like me meet one another and learn more about their conditions. I am proud of how far I have come, and I feel gifted to share my story and listen to others tell their stories. There is so much to look forward to—I can’t wait to see what is next!
What a year! We broke numerous fundraising and awareness records across the board. This year we hosted 80 chapter meetings, bringing support to over 1,500 patients and families. We held 18 “Walk and Rolls” in cities across the country, raising over $235,000. We recently added our 25th Center of Excellence, bringing us one step closer to ensuring access to quality care for patients worldwide.
At our 35th Anniversary Gala, we honored Congressman John Garamendi as our Legislator of the Year, and we also introduced the Estelle Benson Volunteer Award, honoring four volunteers for their exemplary work towards each of our four pillars of Support, Education, Research, and Advocacy.
This year we sent out a new email update entitled “Your Gift In Action.” Each quarter we send an update that highlights one of our mission pillars and demonstrates how your donations help us realize our vision. When you give to the Foundation, you are not just a donor, you are a believer. Thank you for believing in us and for your generous contributions this year!
Save the date! Symposium 2016
Our biggest symposium yet is coming to beautiful San Antonio, Texas, September 23rd & 24th! Featuring an entirely new curriculum, this symposium will focus on managing your conditions in your daily life, and will be a great way to hear from top doctors, meet other patients, and have fun! Find out more by emailing Kelly.McCoy@gbs-cidp.org and look for posts on our website and Facebook. We hope to see you there!
Hear Our Voices: Stories of Strength and Survival from the GBS|CIDP Community
To members, survivors, and friends: we are working on a compilation of patient stories that we will publish and we want your voice to be heard! If you would like to submit your story (one to two pages in length) please email Kelly.McCoy@gbs-cidp.org your word document (or you can just place it in the body of the email) and please include a photo. We will be accepting stories into the springtime.
With all that we have accomplished this year, one thing has never changed: our commitment to our patients. We promise that no one will face GBS, CIDP, or variants alone, and our unfaltering dedication to improving the lives of patients and their families in any way we can drives us forward and brings us together as a community. I cannot wait to see what we will accomplish together next year!
Wishing you a joyous holiday season,
By Shane Sumlin
GBS|CIDP Foundation Liaison, Shreveport, LA
When I read the Fall 2013 issue of The Communicator, I was inspired to try and come up with a local event in my area. I was trying to find meaning and purpose with my diagnosis of GBS. As I explored ideas, I was hitting road blocks until I received a message on Facebook from a high school friend whose son, Austin, needed help. For his senior project, Austin had to host an awareness event and he thought of my story with GBS. Austin came to me with the idea of hosting a “Movie Night,” inviting families to watch a movie while raising awareness of GBS.
The event, in April 2014, was a fun-filled afternoon of games for kids along with tables of information to raise awareness of GBS. Ticket sales, which we sold through social media, were amazing, t-shirts were paid for by local businesses, and the community rallied behind Austin, my family, and others impacted by GBS. We had over 200 people at the event and it was highlighted by a movie that was shown to families at the end of the afternoon.
This event was special in many ways because it showed how a smaller community can host a family event for a great cause such as the GBS|CIDP Foundation. The event raised over $6,500 and all the proceeds went to the Foundation. For 2015, instead of a second “Movie Night,” I focused all of my efforts towards the Dallas “Walk and Roll” in May!
To learn more about what your donations help us accomplish, take a look at pages 10-13 in The Communicator!