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Make NF Research Visible: Jake Lipe

The Children’s Tumor Foundation unveiled its 2024 portrait collection, “Make NF Research Visible.”  Through captivating imagery and compelling narratives, this collection shines a spotlight on the critical importance of visibility on NF research, ultimately uniting us in the pursuit of progress and support for those touched by NF.

Man with crossed arms wearing a "born a fighter" t-shirt, standing against a dark background, looking directly at the camera.

Jake Lipe

Hear why Jake Lipe, who lives with NF2-related schwannomatosis, says making NF research visible is important to him.

The most impactful stories ever told about wars were told by the men and women who fought them. No disrespect to third-party observers, but if you truly wanted to know what it was like to storm the beach at Normandy, fly Hueys into hot landing zones in Vietnam, or track down IED makers in Baghdad; then you needed to hear the stories of the men and women who undertook these grueling and valiant tasks. 

As NF patients our battlefield is obviously a little different, but is a battle nonetheless that we have to wage every single day of our lives. We are truly our own best advocates. Who better to spread awareness and enlighten people on the fight that we are engaged in than those of us who are fighting it? Don’t get me wrong, I am truly blessed with the greatest doctors in the world, without whom I would not be in the position that I’m in, with the quality of life that I have. Sixteen years ago I was getting absolutely torn apart by NF2 (now known as NF2-related schwannomatosis, or NF2-SWN). I’d lost my hearing, had developed a winged left shoulder because of a spinal tumor, and was suffering from double vision. Dr. Plotkin introduced me to Avastin and told me it might be able to help me push NF2-SWN back on its heels and turn the tide in my favor a little more. That was sixteen years ago and I’ve been on it ever since. Dr. Plotkin and I have fought this battle together. We each have our own roles within this fight: him from a medical standpoint and me from a patient standpoint. 

I know he’s always doing his best for me and bringing his A game. It’s my responsibility to return that favor and do my absolute best to beat back this disease. Whether it’s working out to keep my body healthy, eating healthy, or writing blogs to help spread awareness. I’m all in, I’m here to tell my story and bring more people into the fight. We need more patients to step up and do the same. We need people to understand what we are up against. 

We’ve made so much progress, when I was diagnosed in 2003 the options were surgery or radiation. Now we’ve got multiple drugs in trial, we are fighting to get some approved and someday I truly believe gene therapy is going to put us over the top. It is truly amazing how much progress we’ve made but we CANNOT BE CONTENT. Because as much progress as we’ve made we still have miles to go. People need to hear our stories, they need to know why we are so hellbent on finding a cure for NF. “No one is coming, it’s up to us.” Let’s go to work. 

Click here to read the complete Make NF Research Visible collection.