Dear Friends and Family,
Next month I will be running in Rochester, NY at the MIND THE DUCKS 12-hour race. Endurance runs of that length can be quite exciting and tough. Eleven people will be traveling from West Michigan to compete in this unique event. The winners will be those that run the most miles in the 12-hour time period.
I am using this event to help raise awareness of NF2 (Neurofibromatosis type 2), a benign genetic disorder that causes tumors to grow throughout a central nervous system.
My 25 year old niece, Jessica Stone, has been battling this condition for the past 10 years.
Jessica has had her story featured on WZZM TV13 (http://www.wzzm13.com/news/story.aspx?storyid=120419) as well as on Good Morning America (http://abcnews.go.com/GMA/OnCall/story?id=6395437&page=1).
I am asking my family and friends for support as I run this 12-Hour race in New York on May 14.
The money raised will go to the local NF Foundation.
In 2010, NF Inc. Michigan was able to continue their mission to offer educational materials at no charge to the NF community, financial assistance to NF families for NF related medical travel, NF family camp, advocate for $16 million research dollars in D.C., offer free lectures for families and the medical community, support group meetings and NF chat sessions to discuss struggles within the lives of those with NF and lastly provide social events to keep the NF families connected throughout the year.
2011 brings more medical obstacles and challenges for me but I still feel very blessed and hopeful with the next chapters in my life.
It’s hard to believe it has been over ten years since I was diagnosed with Neurofibromatosis type 2 (NF2), a benign genetic disorder that causes tumors to grow. I have had numerous surgeries including the removal of an Acoustic Neuroma that had been causing intolerable head pressure. Although that surgery was considered successful it left me deaf. Another new challenge – A Cochlear Implant. My Cochlear Implant worked well for the first year but I started to have head pressure and noticed that I was not getting the sound that I originally was getting with my C.I. – My tumors had returned plus I needed the placement of a shunt to relieve the pressure from the brain fluid. Although lately I am able to get some sound with my Cochlear Implant for short periods of time.
I started Avastin treatments to shrink my tumors last May which also included having a port placed in my chest. I had my MRI’s in August and it appeared that they had shrunk slightly in size. I had repeat MRI’s in November and the tumors had not shrunk in size but did remain stable. So for now every 3 weeks I head off for my Avastin treatments at the Johnson Cancer Center. I’m thankful the Avastin does not have any side effects other than a little fatigue.
I am in the process of setting up appointments and more MRI’s with my doctors at the University Of Michigan to review all of my records and decide what my best treatment plan is.
So I’m going to continue to keep my head held high and be inspired by life!
Thank you all for your support over the years.
All the best & my love,
You can donate here online or
Mail to: Run4NF 1275 Trillium Trail Grand Rapids, MI 49525
Please note: team-jessica-stone or mind-the-ducks-12-hour on your check
Make Checks payable to: NF Inc.