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How the NF Network Community helped Adam Rosenberg with his son’s diagnosis, and how he’s paying it forward

Neurofibromatosis refers to three different conditions, including neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis (SWN). Each of these conditions involve tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and the rest of the body.

The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts.

Adam Rosenberg, parent to son Max, turned to the NF Network when his son was diagnosed with NF2 at age 8, a diagnosis that took 6 years to arrive at from the onset of his earliest symptoms. Now, Adam is hoping to give other people impacted by NF the kind of support he received. Adam is a member of the NF Network’s board and an active member of the Inspire NF Network Community. You can read more about Adam and his journey with NF from one of his posts on Inspire:

Hello everyone, my name is Adam Rosenberg, and my son Max has a spontaneous mutation of NF type 2. I’m a newcomer to this board, so I wanted to introduce myself, and hopefully get to know some of you better.

I’ve had the pleasure of working closely with the folks at the Neurofibromatosis Network since Max’s diagnosis, sharing our family’s story for Giving Tuesday, doing advocacy work on Capitol Hill, and participating in the wonderful NF Hope concert last Spring.

When Max was diagnosed, I didn’t know where to turn. He was losing most of the use of his right arm and hand, and very suddenly. Our doctor suggested chemotherapy which the insurance denied (they approved the port—still a bit baffled by that). I’ll link more of Max’s story below, but suffice it to say that it was a lot, and all at once. I mention this because that’s how I got into contact with the NF Network, and they immediately put me in contact with other parents of children with NF2. I am not exaggerating when I say I learned more talking to those parents about their lives with NF2 than I had in the previous year since his diagnosis. It changed our lives…Read more.

Read Adam’s full post on Inspire.



Member comments have been lightly edited for length and clarity. This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.

“One small positive thought in the morning can change your whole day.”

– Dalai Lama XIV