Dear Friends and Family,
As many of you know, at the age of 5 I was diagnosed with Myasthenia Gravis, one of the 40 neuro-muscular diseases of Muscular Dystrophy. The disease provided ups and downs through out my childhood and teenage years. However the greatest obstacle I reached was in July 2008 when I was challenged with difficulty breathing, difficulty swallowing, physical exhaustion and severely impaired speech. It was then that I began receiving Plasmaphersis treatments to help try to control the progression of the Myasthenia and ease up on some of the symptoms I was having. I now go every 3 weeks to KU Medical Center where I receive a treatment through the ever growing fistula port in my left arm. Because this disease is now a part of my daily life I've had a great deal of time to reflect on how the disease has impacted my life. I realized I wanted to make a greater impact on others affected by this life changing disease.
In June a few of my friends and I participated in a walk for Myasthenia Gravis Awareness in Ottawa, KS (about 45 miles South of KC) I began to envision being a part of a Walk/5K Run in Kansas City to raise awareness of this largely unknown disease. So I met with the director of the Myasthenia Gravis Association in Kansas City to propose my idea. She told me to go for it and then the planning began! I pulled together a group of 6 friends and we are in the midst of getting this rolling! Hence the SAVE THE DATE!
Please Save the Date for the Greater Kansas City Myasthenia Gravis Awareness Walk/5K Run on Saturday April 9, 2011 in Olathe, KS.
To register for theWalk/Run please go to www.Enter2Run.com and click on the Myasthenia Gravis Walk, Run & Roll.
If you are unable to join us for the walk please consider donating through this website. If you would like to donate more than $150 please contact me as we are still searching for sponsors of our walk. Donating through this website is simple, fast and very secure.
For more information on Myasthenia Gravis please visit:
For more information on Plasmaphersis treatments please visit:
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too! To get more information about the Greater Kansas City Myasthenia Gravis Awareness walk please contact me at firstname.lastname@example.org.