The neurofibromatoses (NF1, NF2, and schwannomatosis) are genetic disorders that cause tumors to grow in the nervous system. Although many people inherit the disorder, 30-50% of cases are spontaneous gene mutations. NF is an autosomal dominant genetic disorder. That means a parent has a 50/50 chance of passing the disease on to a child. There is no cure. NF can be very disfiguring; NF can cause blindness and deafness when tumors develop in the brain, and NF can be very painful. Some tumors become cancerous.
Treatment is aimed at removing or reducing the size of the tumors surgically. Chemotherapy and radiation are also used to try to shrink the size of the tumors when they become malignant.
Abbey's good friend, Erin Gatto, lost an uncle to NF and his daughter is almost blind from NF. The Oslica's, who belong to our parish, have a daughter with NF. Dr. Rob Lambert, a cardiologist in NLR, also has a daughter with NF. When Joseph and Abbey were were little I noticed that they each had a few cafe-au-lait spots. These are light brown patches of skin that occur on the arms, legs, back, even underarms and are often the first sign of NF. As a new mother and doctor I freaked out. Although they did not have NF, I did a lot of research on this disease at that point.
I find it more than coincidental that 16-18 years later I have been reintroduced to this disease through friends, colleagues and fellow church members. I feel like the Lord is calling me to help these kids (and adults). That's where you come in. There have been great strides in research over the last few years, but we still need a cure. I am glad to donate my time and money to run for NF. Won't you please help me? There are thousands of charities out there, and we all have our heartstrings tied to one. Please help me support mine. You can donate through my website link below, mail a check to the Children's Tumor Foundation listed on the website or give me a check and I will see that you receive confirmation.
Thank you so much! God Bless you and your family in 2012!
Anne R Trussell MD
Sei Bella Med Spa
proud member of the NF Endurance Team
http://ctf.kintera.org/nfelittlerock2012/seibellamedspa (click to donate on my LR marathon website)
The NF Endurance Team