Champion: Jake Sensenbaugh

Jake was diagnosed with NF1 at four months of age when his pediatrician discovered a neurofibroma in his right leg. For the next several years the tumor in his leg grew aggressively out of control, reaching his abdomen and spinal column, and we made the decision to amputate the leg at the hip in hopes of preventing further tissue involvement. Despite this challenge and a lengthy hospitalization for dual kidney infections that forced the amputation of his left hand and partial amputation of his left leg, Jake – now 16 – continues to be an inspiration to all who know him and to those he meets. His competitive spirit drove him forward into sled hockey and other sports, and while he has been sidelined since his hospitalization with dialysis treatments to maintain his life, that same competitive spirit has endeared him to professional athletes he has met throughout his life. His cocker spaniel Jasper is a constant companion and motivator for daily life and trips to see family and friends.

3 more champs in


Ayden was diagnosed at 8 months with NF and Pseudoarthrosis of the tibia. By 10 months her leg broke while in a brace. At the age of 3 we decided it would be best for her quality of life if […]


My daughter was diagnosed with NF 1 when she was 5 years old. JJ is now 14. She has had 2 brain tumors removed and they are watching the 3rd. JJ was also diagnosed with epilepsy, ADD, has LD’ s, […]


My sweet 4 year old has NF1. He was diagnosed at 8 months due to the severity of his tibial displacia. Shriners Hospital performed a symes amputation (basically the foot and straightened the leg). He loves his prosthesis. He is […]

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