Thank you so much for visiting my fundraising page!
Asking for donations is not my favorite thing to do but, I have to do it anyway. As you are probably already aware of , I have a rare neuromuscular autoimmune disease called Myasthenia Gravis (MG). I was diagnosed in 2011 after having nearly 10 years of worsening symptoms that evaded multiple neurologist as to their cause. I had just about given up hope on finding help until, as what I considered ‘one last try’, I met Dr Weiss. Unbeknownst to me, he was a specialist in MG. He had me diagnosed in 10 minutes of conversation. Further testing confirmed what he suspected. I can’t tell you enough how thankful and lucky I felt to have made that appointment with him. He was an answer to my prayers and saved my life.
MG causes serious symptoms such as arm/leg weakness, trouble swallowing, speaking and breathing and disabling double vision. MG often prevents us from doing what we want to and need to do. It invariably hurts our quality of life. There are treatments for MG but not all patients respond well to current treatment options. Furthermore, the treatments we have, are not without side effects. My treatment involves taking a medicine every 3 hours, pretty much around the clock, to decrease symptoms. I also get an infusion every 3 weeks called IVIG (immunoglobulins), daily prednisone, and several rounds of Rituxan per year (IV chemo to wipe out part of my immune system). All this to just keep me going and breathing. I’m not looking for sympathy…just filling in the facts.
How is it that it took so long to get a diagnosis you ask? Well, Myasthenia Gravis is considered a rare disorder, affecting approximately 60,000 - 80,000 people in the U.S.. Many doctors never see a patient with the disorder throughout their career. If they do, it’s usually a brief encounter during residency perhaps. Symptoms can mimic other disorders and can fluctuate in severity over months and years. There are a few tests that can be done to look for MG but even then not everyone will always show positive results. It takes a specialist who is proficient and knowledgable to know what tests need to be done, how to do them properly, and how to figure out the results. I guess it boils down to the fact that not that many people have this disease and very few have even heard of it. I’m guessing you may be among that group. Don’t feel bad…I hadn’t either and I spent most of my life in health care as an RN.
PLEASE KEEP READING….almost done…I promise :)
I am fundraising for the Myasthenia Gravis Foundation Of America (MGFA). My personal goal is $2500.00. I’m hoping you will find it your heart to help me reach that goal! Our Tampa Bay Walk is scheduled for March 11 th…yippee! I know many of you attend yearly and I thank you for that. If you have never been to one of the MGFA Walks or its been a while since you last went, I encourage you to come on out, I would LOVE to see you there! It is a great time for all of us, with our family and friends in tow, to come together in support of one another. People come from many surrounding counties and some will be meeting others with MG for the very first time. It is also a time that we can help raise awareness for this disease and show our support for the MGFA.
The MGFA is our ONLY national volunteer organization in the fight against MG. Because of them we have our support group plus, many more across the US. They have created the MG Registry to help show researchers that there are enough of us to make more research and drug development worth while. They host annual conferences so that we may learn more about our disease, what’s new in research, and ways to live and cope with MG. They provide learning materials, presentation videos, webinars, and podcast to all who wish to have them. The list goes on and on. They are OUR largest voice and advocate in many ways. The annual Walks being held across this nation throughout the year are their flagship fundraiser. Without our help and support there would be no MGFA. I can tell you for a fact, that I and many others owe our life and emotional sanity to them. For me personally, I felt so alone when I was first diagnosed but I found the MGFA and it changed my life. If you are interested in their financial information click here http://www.myasthenia.org/AboutMGFA/FinancialInformation.aspx
We are also in need of sponsors for the Tampa Bay MG Walk. If you own and business and would like to help (tax deductible), please click here to see the sponsor forms/information http://www.mgwalk.org/wp-content/uploads/2014/01/2017-MG-Walk-Sponsorship-Packet.pdf
Thank you for ALL YOUR HELP!
Until there's a cure...There's hope. And for that we have each other!