Sunday, October 3, 2010

NF Symposium

Today Sara and I attended the NF Symposium to hear information about NF and what is going on in the community.  My dad attended the lectures with me while Sara went to the Kids Club to play. 

The lectures were full of valuable information, although most of it I already knew.  The first lecture was specifically about plexiform neurofibromas (pNF), which are the fancy medical term for the type of tumors Sara has.  Mostly she talked about what they are and how they work, which I mostly already knew.  This lecture did hold the one bad piece of information of the day, which is the fact that Sara is at increased risk for having one or more of her tumors turn malignant (cancerous).  Sara has a 10% chance of this happening.  There are several drug trials currently going on involving children with pNFs.  They are all in Phase I or Phase II currently, which means they are years from being completed, let alone FDA approved.  But hopefully one of them will show progress in stopping growth of the pNFs, or even shrinking them, and years from now there will finally be a medication to help NF patients.

The second lecture was about cognitive function and learning disabilities in NF children.  This lecture was fascinating, but I'm not to worried about Sara in this area.  The doctor stated that children with NF show signs of learning disabilities very early on, and Sara is actually at the other end of the scope in the fact that she is excelling beyond her peers.  Apparently most people with NF have a lower than average IQ rating, but again I doubt that is the case with Sara.  The doctor who gave this lecture is one of Sara's current doctors, so after her lecture I asked that we retest Sara at NF clinic (which is on the 18th) because I wanted to see where her cognitive skills sat currently.  I know where I think they are, but that may not agree with what the test shows.

The third lecture was about eye care in NF patients.  Honestly, I tuned out for the majority of this one.  The speaker was boring and monotone.  And all he pretty much talked about was tumors in the face and near the eyes, none of which Sara has.  He used a lot of big words, and most of what he said was beyond me.  It just wasn't a very good presentation in my opinion.  He obviously didn't keep his audience in mind.

The last section of the symposium was a panel of 4 people currently living with NF.  I found it interesting to hear what they had to say, but none of them where younger than 25.  And by the time Sara is that age, there will be so much more known about NF and maybe new treatments.  So I didn't find this all that useful, but maybe as Sara gets older I will.

Over all it was a good day!  I learned some new things, some good and some bad.  But mostly it was great because I got the chance to spend time with other members of the NF community, and that is always a good thing.  Sara got to play with other kids her age, some with NF and some without, and I got to discuss NF with other parents.  Since there aren't a lot of answers for NF, mostly just questions, its just nice to know that there are other people out there and you aren't alone.  Since science can't always provide the answers, you sometimes I have to come up with them on your own.  And honestly, who better to brain storm with than someone else navigating the same rough sea as you.  Together we are strong!


  1. We are stronger together. So good to see y'all again today.

  2. I'm so bummed I missed this wonderful event, but I'm very glad it was at least somewhat insightful for you. Moreso, I'm glad you got some time for community. I can only help and support so much, so I'm glad you have the support of those out there going through it, too.