Neurofibromatosis Research Conference in Florida

Last Monday at Bonita Springs, Florida, I spoke at an international conference of medical researchers on neurofibromatosis, the condition that made my daughter deaf.  Other than a handful of patient family representatives who were invited to provide a human perspective, the participants were research scientists and medical specialists from top unitiversties and research centers around the world.  I could understand little of what most of them said, but I hope they could understand me.

I pointed out that the time from Pearl Harbor to VJ Day was 3 years, 8 months and 6 days. If World War II could be fought and won in that time period, what are the obstacles to coming up with some workable tumor growth suppression agent in that time period? What are the obstacles to delivering a universal genetic disease screening tool, to assure early diagnosis and appropriate referral, within that time period? How can we overcome those obstacles? Remember that the perfect is often the enemy of the good, and this generation of kids with NF need reasonably good solutions now, not just the hope of perfect solutions when it’s too late to help them.

The same point about time and urgency can apply in many areas of life and work.  Think about it. If WWII could be won in 3 years, 8 months and 6 days, what is our excuse of letting so many endeavors drag out as long as they do?

  • Ken, well said. I’m Candice Patterson fighting a good fight with NF for 38 years, and asking the same questions. Now I race on the NF Endurance Team and use my life with NF to bring awareness. Steve Kendra of the NF Team was at that meeting, I wish I would have know that there was more of a need for the human perspective regarding NF and research. One of the pursuits I’ve been thinking of is how to get the NF gene added to the prenatal blood testing. Currently there are diseases in this test group less prominent than NF. Working hard so that this is not an orphaned disease. You are not alone in your puzzlement. All the best to your daughter. My team is located in Tampa.
    Candice Patterson

  • Ken, I just noticed your location. The local NF Endurance Team in your area are the Tumonators run by Chad Leathers. His brother Drew Leathers has NF. Chad is a huge advocate in your area. July 4th team members are running in a 10k ,,Peachtree run (maybe, can’t remember the name.)

  • Paige

    Ken, I didn’t realize your daughter had NF. My grandmother, aunts and cousins have all struggled with NF as well. My young cousin now has a neuroma on her pituitary gland – inoperable, but shrinkable. We all hope your words were taken to heart. Definitely, something to manage/prevent new neuroma growth would be welcomed heartily…not just the promise of a future cure!

  • Bill Bl

    Does anyone know of a NF expert in the Atlanta area?