The Children's Tumor Foundation!!!
Dr. Trussell is team captain of the NF Endurance Team! We are running, biking, golfing and volunteering to find a cure for neurofibromatosis!
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 this disease on to their 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. There is NO cure.
Dr. Trussell's daughter, Abbey, has a very good friend who lost an uncle to NF and his daughter is almost blind from NF. The Oslica's, who belong to our St. Joseph Conway 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, Dr. Trussell 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 she freaked out. Although they did not have NF, she did a lot of research on this disease at that point. It is more than coincidental that 17-18 years later Dr. Trussell has been reintroduced to this disease through friends, colleagues and fellow church members. She feels like the Lord is calling her 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. Dr. Trussell is glad to donate her time and money to run for NF. Won't you please help? There are thousands of charities out there, and we all have our heartstrings tied to one. Dr. Trussell's heart is in this one. To learn more about NF visit www.ctf.org.
Currently Dr. Trussell is training for the London Marathon on April 23, 2014. She runs for her NF Hero, Austin, and has started a blog to record that journey. You can follow her at www.marathonforaustin.blogspot.com
Our team raised about $20,000 running the Little Rock marathon.
If you like to run, golf, bike or just have a good time with great people, let me know, and we'll get YOU on the team! We need you!
Check our upcoming events at:
This is Austin. He is Dr. Trussell's NF Hero and the reason she runs. Austin was diagnosed with Tetralogy of Fallot at birth and had open heart surgery at 4 months of age. He was diagnosed with NF before the age of 1. Austin is now 7 yrs. old.
Part of our Arkansas NF Endurance Team at the annual Dancing With Our Stars Fundraiser...
Dr. Anne Trussell, Lesley Oslica, Pete Tanguay, and Jennifer Welter
Dr. Trussell with the Children's Tumor Foundation Arkansas Chapter President,