I am thrilled that my brother in law is joining the NF Endurance Team for The Children’s Tumor Foundation. Even though our family has participated in the Marathons for CTF over the past ten years, he truly is the family athlete as far as running is concerned. Our family run/walks but Uncle Rob runs and runs fast. He also has always been a huge supporter and confidant in our journey with our son Joseph.

Joseph was diagnosed with NF right after his third birthday although the café au lait spots appeared at four months. He had a great deal of developmental delays and benefited from early interventions of speech therapy, occupational and physical therapies. He continued well into elementary school receiving special education services and now attends a small private school for students with learning differences. He has struggled with learning disabilities, a result of the NF, and has a mild Cerebral Palsy diagnosis as well which affects his motor coordination and balance. However despite the challenges, Joe loves school and participates in intramural sports at his school. We have been very lucky. Last MRI of his brain however we found a mass, a cyst, unrelated to NF apparently, between his skull and brain. Brain surgery wasn’t what we had planned this summer. We have an excellent Neurosurgeon but also went up to Johns Hopkins to get a second opinion. The bad news is that the cyst stays: the good news is that we don’t have to do surgery-as long as it remains stable. No brain surgery today. Yea! But the battle is not won. NF does not just affect one child, one adult. It affects 1 in 3,000 and not everyone has been as lucky. Luck also has a tendency to run out because it is important to realize that NF is a progressive disorder. So where does that leave the family?

Our family has decided to be pro-active. We have formed Chapters of The Children’s Tumor Foundation in States where we have lived and have served on the boards of Chapters where we live now. We have spoken out to legislators and scientists about the urgency in finding appropriate treatments and a cure for NF. We have held Golf Tournaments, supported clinics, and walked many a mile with blisters, sore muscles and a smile on our faces. We have met incredible people that have become a part of our extended NF family, but the best part is the love extended through our family’s efforts to help us finding effective treatments and a cure. Please walk with our family as Uncle Rob does the ultimate, and runs a race for hope, health and wellness for all those with NF, but especially for his nephew, Joe.

Hannah Ehrli