Wednesday, February 6, 2013

Neurofibromatosis on BONES!

I was watching this episode of Bones with a lot of anticipation.  I kept waiting and waiting for mention of 'Neurofibromatosis' and it came in a way I didn't expect.  I wasn't disappointed....But I wasn't overly thrilled either.

'NF' was portrayed as a sick persons disease, that "Anyone can get" (which if I didn't know anything about NF...I would think that I could not just "get"...but "catch").  

It rubbed me wrong.  It was like clever  not-so-clever product placement.  It felt forced.  It felt like the actors were just reading the back of some pamphlet.

While I am VERY HAPPY that Neurofibromatosis is getting some attention, I think we still have work to do.

And what was up with the whole keeping the secret of helping these "sick kids"...??

I get the idea of doing great things, without getting the attention for it....But, it just seemed like since we are getting NF OUT THERE and TALKED ABOUT....that we didn't need the Secret keeping story.

Anyways....That's MY 2-cents worth.  Let me know what YOU thought!!  <--Link will take you to the on-line episode


  1. The episode is locked unless you're a cable subscriber. It will be unlocked in about eight days. I will watch it then. I wanted to watch it when it aired but it comes on at the kids bedtime ...bummer.

    So sad to hear it's not accurately portrayed.

    1. It wasn't horrible...Just a little bit off. Also, one actor pronounced it incorrectly at the end of the episode...
      But for me...I was watching it with critic eyes...if you know what I mean.
      Glad NF is making progress :)

  2. I thought that they had mentioned a few times that it was genetic. They basically took the info word for word from the CTF site. (yes, perhaps forced and the easy way out but it was out there just the same.)

    One of the producers daughters has NF1 and I think it was just their way of getting a storyline in there to promote NF and CTF that really had nothing to do with the show. To me, it reached TONS of people that would not have heard about NF at all. I was thrilled!

    I had people messaging me that they had no clue and that the show educated them a bit. And that, was the whole idea.

    I will take anything, and especially a highly rated TV show, that gets the word about NF and CTF. WE NEED MILLIONS TO KNOW. WE NEED MONEY FOR RESEARCH. CTF and the website was shown several times and if even one of their many viewers took the time to donate or look up more then they helped tremendously.

    So, that's my thoughts.Let's keep those television shows mentioning NF! Then, how about some movies, commercials, newpapers, websites, facebook pages, blogs......and you Kristi have also done a ton! Thank you for the book, the blog, the facebook are amazing, as is your family! :) ((hugs)))

    1. I knew one of the writers/producers child has NF...And I applaud them for doing the show....Progress is Progress :)
      I also had people message me saying they learned from the show...I just think it could have been MORE. :)

      Small steps are being made, and for that I am grateful!!

  3. Olyviah said "what they have a carnival for kids with NF, can we go?" I laughed. But we feel the same as you.

    1. There should be a carnival for kids with NF! :) Thanks for your comment HUGGS

  4. Totally agree! I found it very generic and I was disappointed that NF was portrayed as a "sick CHILD" disease...terminal...
    Yeah they explained it..>KINDA...but if I was watching it, knowing nothing about NF, I would think that based on what they said, that I could CATCH NF...even tho they said it was a genetic disease---They said "ANYONE CAN GET IT" wasn't clear enough.
    I did not like that the character was hiding that he was helping these kids...It felt wrong. It felt like NF SHOULD be hidden---

    Progress...But still not good enough- In MY opinion!
    Thanks Kristi for sharing your opinion...I love LOVE LOVE your blog and your attitude!
    You are just amazing!