I am thrilled and a bit nervous about running the Boston Marathon to raise money for research on neurofibromatosis. Rogan's summertime pal and long-time friend, Gaeb (flexing his muscles on the right), was diagnosed with this disease when he was 2. Now, as a big 6-year old, he is showing us how courageously he deals with his various tumors.

Although neurofibromatosis isn't very well known, it occurs in one of every 3,000 births. Neurofibromatosis is a genetic disorder that causes tumors to grow on nerve tissues and can produce skin and bone abnormalities. Occasionally tumors develop on the brain, on the cranial nerves, or on the spinal cord. This year, doctors diagnosed two small tumors on Gaeb's brain and numerous growths along his spinal cord.

Fortunately, researchers are discovering genes that appear to play a role in tumor suppression or growth. Understanding the mechanisms of certain proteins will allow scientists to design drugs that could replace the missing proteins in people that have the neurofibromatoses and return their cell production to normal.

Thank you for your support.  All of our efforts together help NF get one step closer to finding a cure, which will be a gift to innumerable others afflicted with NF as well as those of us fortunate enough to call Gaeby our friend.