Wednesday, March 27, 2013

Team Moss's Team Page for NF Walk 2013 Nashville, TN

Team Moss's Team Page for NF Walk 2013 Nashville, TN

Our son, Philip, was diagnosed with Neurofibromatosis Type 1 (NF1) in the Fall of 2011 after surgical removal of what we thought was a swollen lymph node on his neck.  The pathology showed that he had a large benign plexiform tumor in his neck linked to his diagnosis of NF1.  The tumor continues to grow and we are under the excellent care of the UAB Genetics Clinic that is part of the Children's Tumor Foundation NF Network of clinics. The care we receive there, as well as the new clinical drug trials and ongoing research provided by the Children's Tumor Foundation is critical to our son's life.

Our daughter, Helen, was confirmed to also have NF1 in January 2013, but she shows no known symptoms at this time.

We are working to educate ourselves, our family, and friends about NF1 and to ensure that our son and daughter have the medical care they for a long and productive life.  We are blessed to be in Birmingham, AL where the top genetic physicians and researchers are on staff at UAB Genetics Clinic and we maintain close relationships with specialists at our award winning Children's Hospital.

Our current prognosis is very concerning with Philip and positive for Helen.   But we have learned much about NF1 this past year, and we know that this genetic disorder is a difficult, worrisome, and complex one for patients and their families.  It is for this reason that we walk in support of finding a cure and improved treatment.

Thank you for joining in support of our efforts here at Team Moss!  If you live in the Nashville area we would love to have you join Team Moss in the NF Walk on Sunday, April 21st!

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