Welcome to my fundraising page! I have already completed the Seattle Rock'n'Roll Half marathon and am soon to run two marathons. I successfully raised $700 from April through July! See the page here
With 5 marathons under my belt, I am going to raise the challenge by running back to back marathons: the Bellingham Bay Marathon on Sept. 27th and the Portland Marathon on Oct. 4th.
I am running with the Children's Tumor Foundation Endurance Team to raise money for researching Neurofibromatosis (NF).
So, what is NF, you may ask? NF is the name given to a set of genetic disorders. There are three disticnt types--NF1, NF2, and Schwannamatosis . I have NF1, which causes, among other things, birthmarks (called café-au-lait spots) and tumors that grow on nerves anywhere on the body. It may also lead to disfigurement, blindness, deafness, brain and spinal tumors, bone abnormalities, and learning disabilities.
NF1 occurs 1 in every 3,000 births. The disease affects both sexes and all races and ethnic groups equally, and is more prevalent than Cystic Fibrosis, Muscular Dystrophy, and Huntington's Disease combined.
I have many birthmarks and more than 30 neurofibroma tumors on my body most of which are underneath the skin over nearly every part of my body. All are presently benign. The most visible manifestations for me are the large café-au-lait on my neck and the plexiform neurofibroma on the right side of my face and neck. I have had three surgeries to remove those visible tumors.
Because of this sensitive location, there is a great risk involving facial nerve that could leave the right side of my face paralyzed. The tumor has also grown around my right ear canal and blocks hearing and causes some pain in that ear.
There is no cure for NF, no way to predict where and when tumors will grow nor is there any treatment to prevent or stop tumor growth. This is why research is very important, and why your donation can help! My story is only one of many thousands. Together we can help find an end to this disease.
I am more than willing to mail you donation forms if donating online is uncomfortable, just email me your address to deacmegmeg(at)gmail(dot)com. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
Please feel free to visit the Children's Tumor Foundation website for more info on NF and the NF Endurance Team to read about our other races, fabulous people, and where your money goes. |