Dave Schweder

As I sat outside my hotel on a nice cool morning at Mayo Clinic drinking my vanilla chai and waiting for yet another MRI that’s scheduled in about an hour, my mind is reflecting back on our families journey through this disease that started 38+ years ago.
When I was 11 or 12 finding out my mom had a large brain tumor that needed to be removed immediately. We were told at that time that having tumors on both sides of your head were extremely rare. My senior year of high school I remember going up to Don Werntz after one of our basketball games at Rockford West High School to give her a shout out since she was unable to attend a game of ours because she had lost almost all of hearing in her “good” ear from what we thought was noise from all the previous games. Only to find out she had another very large tumor on the opposite side that would require another surgery to be done right here in Rochester at St. Mary’s Hospital.
Little did we know that would be the beginning of our journey with NF2. Countless doctors appointments, scans, needles, medications, travel to finding a doctor that even knew what NF2 is.
It’s 2019 and we are still battling. My mom had to have another surgery on the same tumor that was first removed some 38 years ago. It grew back. Today is my one year anniversary of my first cochlear implant having lost most of my hearing from the damage that NF2 causes. I’m in the small percentage of people that a cochlear implant will help. I’m fortunate. My sister was not. Completely losing her hearing many years ago, still in her 30’s.
Living with constant pain in your arms, back, legs and trying to manage it with new prescriptions and injections.
We found out our families battle will continue for many more years when my youngest son Cam was diagnosed las year. For those of you that have children. Imagine the pain of finding out your child inherited this disease from you and watching him go through it all as you have. I do not wish that on anyone.
Research has come so far in this disease. But, there is still no cure. In my opinion. NF2 Biosolutions is our best hope.
If you read this, and it touched you in any way. I urge you to visit my fundraiser. Doesn’t have to be a lot. Every little bit helps.
Thank you.