Jake is a native of Edwardsville, Illinois. He was diagnosed with NF2 at the age of 18 after he noticed he could no longer hear out of his left ear. In 2003, he had surgery to remove the left acoustic neuroma. Five years later, Jake lost the hearing in his right ear, and was left completely deaf. It was also discovered that he had a winged left latissimus dorsi muscle due to one of the spinal tumors. The deformity had really deteriorated the range of motion in his shoulder. He went to Boston where it was suggested they try to treat the NF2 with the chemo drug Avastin. Jake has been on and off it ever since. Even withAvastin, Jake still feel the effects of NF2. He has cataracts in both eyes. He gets nerve pain whenever the weather changes. In 2012, he had to have a second brain surgery, to remove a tumor that was right on top of his skull. The surgery was successful. Jake also describes having issues with fatigue, and he worries a lot about the health of his kidneys because of long-term Avastin use. There’s a tumor on Jake’s spine that is likely going to have to come out at some point.

Jake’s greatest love is hockey. “I was 31 when I started, that’s old in hockey years.” Hockey is a game that requires balance and coordination, two things that NF2 reeks havoc on. Jake sees playing sports as a great way to hit back at NF2. It keeps his body healthy physically, and it feeds a certain part of his psyche that nothing else feeds. Jake had his own hockey jersey made. It proudly displayed the words “NF Fighter” on the front, and “Type 2” sewed on the back. “You’re not just training to play hockey, you’re training to beat NF2. You’re preparing for the next surgery. You don’t suffer from NF2, it suffers from you.”