BONES Writer Michael Peterson on Bringing Neurofibromatosis Awareness Mainstream in ‘The Doll in the Derby’

February 1, 2013 by  

While a lot of focus on this Monday’s brand new episode of BONES has landed on the flashy roller derby element of the hour, there’s something else of note going on as well: for the first time in the show’s eight seasons, the series will shed light on the genetic disorder neurofibromatosis.

And while how neurofibromatosis ties directly into the episode is spoilery (I’ll have more for you about that post-airing in order to not ruin the hour), I spoke with BONES writer Michael Peterson (who penned Monday’s episode, “The Doll in the Derby”) about his personal connection to the disease, deciding to finally write it into an episode, and got a few “The Doll in the Derby” teases…

I know this is a personal story for you, so what can you share about your inspiration for writing this episode?
Michael Peterson: It started with my daughter who was born three years ago, Natalie, and she was born with  neurofibromatosis and we didn’t know it at first. It took a while until the diagnosis came. [My wife, Kelly, and I] just had no idea and neither did our first three pediatricians. She had multiple birth marks on her body and a bend in her tibia bone, but the doctors said the birth marks were birth marks, and the bend in the bone, they thought it was bowing. And it wasn’t until a couple of months went by that we noticed there was something strange here. And finally, the third pediatrician…said we have to send you to this orthopedist…and he told us Natalie had NF, and the main indicator was the bowing of her tibia.

And at this [point] I already worked on BONES, so it was kind of strange to me — I had this beautiful daughter and she had this illness that could manifest in millions of ways, almost, and the way it was manifesting with her was a bone issue.  At first, my wife and I were just stunned. And this is a tricky illness. There’s a wide range of how it can impact people. Neurofibromatosis means tumors can grow anywhere there’s nerves on the body…and there’s nerves everywhere in the body. So you can get cutaneous ones, where basically you’re getting bumps all over your skin. I know a kid who has had tumors in his brain since he was two and they’ve had to put him on chemo [since then]. You can go blind because of tumors that are growing on your optics. But for Natalie, the only indication she’s had has been this bend in her bone. So it was tough for us to get an idea of what was happening.

I came back to my job and half of what we do is come up with bone stuff for storylines. And the amazing thing is we had never done anything with NF before. And I came to all the writers when we first figured this out and I said, “If anyone does a story involving neurofibromatosis, I’ll kill you all.” I just wasn’t ready. And it wasn’t until this year slowed down and I said, there’s an opportunity here: this strange coincidence, there’s the possibility to do something with it; to reach out and to help people know about this, because I had never heard about it and a room of writers who spend their day doing research didn’t know about it, and yet it’s an illness that affects one out of every 3,000 children born. So it’s [impacting people] more than Muscular Dystrophy, more than Huntington’s, more than Cystic Fibrosis put together. And those are all illnesses I’ve heard of, and I’d never heard of NF.

So the first thing was to write an episode to raise awareness. But the challenge was so much of what we do, the bone clues that we find, are on victims on a dead body. And I couldn’t do that. I just said there was no way I could write that storyline with my daughter having NF. So that’s where the genesis of the idea came; I knew what I was not going to do.  So I was trying to figure out how you get the word out about NF and do it organically.

Whenever a show tries to relay information about a topic, there’s always a risk that the scenes feel preachy or that the audience is being talked down to. That certainly didn’t seem to be the case here, so was there something special you tried to make sure to avoid doing when writing the script?
MP: I think what really helped is that so few people knew about NF and my daughter…her tibia broke when she was one-and-a-half, and she’s been in a series of a casts. For a while, she was in a spica cast. And this was after the leg broke and they had to put a rod through the leg, through the bone to straighten it out. And then they had to wrap it with bone protein, they had to take it out of her hip to help it to heal. And while it was healing they put her in this thing called a spica cast, and what that does is not just immobilize one leg, but both of her legs.

The cast goes all the way up to her chest, so she was completely immobilized for five months, and we had a series of other casts on…but because my daughter had such an outward sign, people ask about it all the time. They see the cast and they ask, “What happened?” And I think because we’re asked all the time, we don’t shelter her, we take her out, she goes to…Mommy and Me classes. My wife stays at home and is just the best mother in the world and has done a terrific job taking care of Natalie. But because people ask all the time, it’s really very natural for us to talk about it, I think that helped; it didn’t have to come across as preachy. We’ve given this talk so many times, it’s just part of our daily life.

People ask about it and we try and inform them, and let them know because we really found…in a way, we’ve had to become ambassadors for NF and spread awareness. And we try and do it in a way that isn’t preachy, because nobody does want to get preached to. Everybody’s curious, but nobody wants to be talked down to. So I think the practice was really helpful in writing the script.

Given how big BONES’ audience is right now, was there something in particular you wanted to highlight with this episode? Was there just a general awareness you wanted to spread or a charity/organization you wanted to highlight?
MP: Both. I think first is to get the name out there, so it’s something someone recognizes. As I said, it’s a much more common illness than others we know of and others have heard of. So first is to spread awareness.

Second, there’s a fantastic charity called The Children’s Tumor Foundation. We do a walk every year for NF and everybody picks out different names, Team whatever your child’s name is. And my wife and I, instead of calling it Team Natalie, our team is Team Cure NF. And that’s our goal.

As we say in the episode, NF, there is no cure, there is no treatment. We want to not only spread awareness, but we want to find a cure in our daughter’s lifetime. So that’s what we’re dedicated to: first to tell people what it is, and then we want to do whatever is necessary to help people out. So that’s our number one thing. We are blessed to have this opportunity to reach out and tell an audience of 10 million people, “Here’s this thing you may not have heard of.” But we also do get to mention the Children’s Tumor Foundation. So we’d love it they visit the website and read about the good stuff they’re doing.

I have to ask about the episode itself, because Fox did release in the promo that Angela and Booth kiss. Have you been getting feedback about that already, or are people waiting to see what happens when the episode airs?
MP: I’m lucky, I’m actually writing another episode for [later in] the season, so I haven’t been on my Twitter account too much. So thank goodness for that. Everything I’ve been getting is pretty positive. There’s lots of feedback I’m getting about that, but I’m also getting a lot of stuff about the NF stuff. Just a huge amount of positive outlook from that.

But it’s always curious what’s going to be picked as the moment that gets promoted. That is certainly one that’s going to get the audience talking, but I think they’ll be fine once they see the episode. They’re not going to worry about Booth and Brennan.

Was that actually something you guys had been playing with doing for a bit? There’s always been a bit of chemistry there, but it always seemed off limits because Booth and Brennan were clearly heading towards coupledom from the start of the show…
MP: I’ll give complete credit to [BONES creator] Hart [Hanson] and [executive producer] Stephen [Nathan]. That was totally them, and in the best of ways. It was something I think had always been considered, but it was always whose script it was going to go into and at what moment. And I think the opportunity just arose and I’m glad it finally happened. It was a challenge to do because of Booth and Brennan’s relationship, because of Angela and Hodgins relationship, but sometimes you just go for it. And I think it works. I couldn’t be prouder the kiss happened in [my episode].

It was just a fun episode top to bottom. Obviously there was a personal connection for me. Michaela [Conlin (Angela)] had a blast rollerskating. The LA Derby Dolls were just fantastic. They are bruisers, they are amazing watching them go around that track. And the crew! Just top to bottom, it was one of those episodes I was glad to be a part of.

Well, since you mentioned you’re working on an upcoming episode, I know you tweeted out the working title was “The Stiff in the Thong”…a) were you serious?! and b) what can you say about that episode?
MP: [Laughs] It was tentatively called that. The new official title is “The Party in the Pants,” so those are your two hints. Either title works equally well for this episode. It’s going to be a fun one. I’m writing it with [fellow BONES writer] Keith Foglesong, and we’re having a blast as you can tell from the titles. I’d like to see what everyone starts guessing…I believe it’s 8×18!

Is there anything else you’d like to say about the experience of making “The Doll in the Derby”?
MP:
I think the big thing is my thanks to the wonderful cast and crew, and the people at Fox also who have just embraced this in every way possible. All of the people here donated to the NF walk we did last year. And allowing me to do this episode. Hart has been [tweeting] about it left and right, and it’s a blessing. It’s strange the twists and turns life throws at you, but I couldn’t be more blessed to be working with this group over here.

“The Doll in the Derby” airs Monday, February 4th at 8 PM on Fox. And make sure to check out The Children’s Tumor Foundation and Children’s Hospital Los Angeles, both of which played an important role in the NF storyline.

Related:

BONES: ‘The Friend in Need’ Photo Preview
BONES: ‘The Shot in the Dark’ Photo Preview — Brennan Gets Shot!
BONES: Hart Hanson Talks Booth/Brennan, Hodgins/Angela, Cam/Arastoo, Brennan’s Mother, and More

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Comments

31 Responses to “BONES Writer Michael Peterson on Bringing Neurofibromatosis Awareness Mainstream in ‘The Doll in the Derby’”

  1. Suan on February 1st, 2013 8:45 pm

    Interesting story and am always impressed how Bones tries to bring public awareness to new topics. As much “fun” as HH thinks it is for Ang to kiss Booth, it fairly turns my stomach. Yes, I know she’s undercover, blah, blah, but that is her supposed bff life partner who she has been too interested in for over 8 years. It cheapens the relationship and yes they will play it for laughs, sorry, no laughing at my house.

    Are they trying to make Hodgela more douchy? Hod demeans and belittles his friend Wendell and Ang hits on Booth. yak

  2. Cindy on February 1st, 2013 8:50 pm

    What, they want to explore the chemistry between Booth and Ang NOW??? Are they serious??? It just makes me mad, how about all those years when neither one was committed to anyone else? It might have been bit of an interesting story, now it just feels skanky.

  3. Alexandra on February 1st, 2013 9:07 pm

    This episode looks very interesting, looking forward to it. Thanks for sharing that part of your life with us Michael I’m sure it’ll raise awareness. BTW, you daughter is so beautiful!

    About the KISS: By how it looks in the promo, Angela is using the kiss as a distraction due to her position as undercover ‘agent’. I’m not sure why some are worrying about it.

  4. Linda on February 2nd, 2013 10:37 am

    I don’t think worrying about the kiss is the point. The point is it might have been fun in season one or two this is season eight, a married woman kissing her best friends boyfriend… in what universe is that fun, it’s skanky. Don’t even get me started on other ways that she could distract him, a hug, a caress to his face. nope she had to do a full on kiss and booth doesn’t exactly look pleased.

  5. Evan on February 2nd, 2013 10:57 am

    Never heard of that disease or condition be interesting to see how they tie Booth’s health issues to it, that is if they do. Sorry, but this season is so uneven to me, the Continuity just sucks. a big issue is introduced then dropped. Timeframe are all out of whack. 6 eps later we find out only a month has lapsed (Sweets move in with B & B) It’s almost impossible to follow the storyline this season, IMO.

  6. Lori Lagrone on February 4th, 2013 3:48 pm

    I am very excited to see that this episode is about NF. My daughter was diagnosed with NF last spring when we found her first tumor. She is 13 and has accepted her diagnosis very well. I am very pleased to see tv shows like this promoting awareness! Thank you.

  7. Emily on February 4th, 2013 4:12 pm

    I am excited for this one. I have NF1, as did my dad and brother. Unfortunately they have passed due to cancer. Dad had the tumors all over his body, my brother had one leg longer that then other (and swollen), spinal curve the cafe-au-lait. I am luck so far, just the sports and a few tumors. But I know getting pregnant will make it worse. Glad to see more awareness getting out.

  8. Arlen Birdwell on February 4th, 2013 4:59 pm

    I want to thank you for bringing awareness to NF ,I have NF1 and have tumors all over my upper body ,I will be 50 in may and as a child I felt like I was the only one with this condition, so I know the importance that tv shows inlighten others so that kids today don`t think that they are alone .GOD BLESS YOU .

  9. Alisa Scoles on February 4th, 2013 5:37 pm

    This is truly amazing my daughter was diagnosed when born in 2008
    It has been scary not knowing when a symptom might come along
    She will be 5 this month and has been clinically diagnosed as our insurance
    Won’t pay for blood work but they believe she is the 1/40k to get it not genetically.
    As 5 is approaching many behavioral issues have shown such as ADHD it’s been tough as I am a single mom and a nursing student and work. To see this is amazing as there is no cure simply tumor removal leaves this disease/disorder scary for any parent!!

  10. Bill on February 4th, 2013 9:03 pm

    I missed the show but THANK YOU so very much. I have NF1 and it is good to see it mentioned in the mainstream.

  11. Becky Irvine on February 4th, 2013 9:12 pm

    Thank you so much for this type of awareness. Our son was 7 when he was diagnosed with NF2. He is 9 now, his bilateral schwannomas have not grown since dx but a tumor in his common peroneal nerve is causing serious foot drop, nerve and leg atrophy. We need a cure now, thank you so much for helping us bring awareness.

  12. Cecile on February 4th, 2013 9:15 pm

    Fantastic to see NF on Bones! We LOVE the show and even more so now. :) It seems, that so many have never heard of NF before it touched their lives. We were some of those people. Thankfully, our daughter has yet to have any problems compared to what others face on a day to day basis and my heart goes out to the families who have been touched by this disorder. (as with any disease or disorder) Thank you for sharing your story!

  13. monica c on February 4th, 2013 9:20 pm

    i have nf 1 and im 34 years old…watching bones tonight brought tears to my eyes that this disese was finailly regonized….i hope this will help bring more awareness about this condition….ty for airing about neurofibromatosis..

  14. cathy cozzens on February 4th, 2013 9:24 pm

    Ty so much for this episode, I too have NF1 . I found out when I was 16 and after the fact it explained alot of things. I’mm 55 now and on permenant disability. I always worked my whole life, and that is what put me where I am now. I worked in a very hard field . Life can be hard and medical attention difficult to get wgen you don’t have isurance. I make $51 too much on my SSDI to qualify for medicade. I have to wait 1 more full year , untill I can get medicare. I’m trying to get into the NF clinic at Vanderbilt. Fingers crossed and GOD BLESS YOU .

  15. Dianne Mercieca on February 4th, 2013 9:32 pm

    Both my late husband and my 28 year old son have NF. I can’t tell you how much I appreciate you bringing awareness to this condition. I watched the show and it brought a tear to my eyes because I was so happy that someone cared enough to do this. FYI Gilian Anderson from the X Files brother has neurofibromatosis. When my son was a baby they discovered what chromosone it was on and predicted a cure in 5 years. Well 28 years later and there still is no cure but with this informative show there may be some donations needed to reach this goal. Thank You. Everyone associated with this condition appreciate the show.

  16. Tracy Galloway on February 4th, 2013 10:03 pm

    yes…my daughter who is 20 has an even rarer form of NF called NF2 which causes deafness, facial paralysis, sometimes blindness, and eventually cripples the patient and in many cases leads to an early death..all that after multiple, multiple brain and spinal operations. I so appreciate you raising awareness this way Michael…I know how hard it is sometimes to talk about it or see it. Just God bless you for using your assets to try to increase awareness so that we can find a cure for your precious daughter, mine and so many others…and thank you, thank you for raising awareness for The Children’s Tumor Foundation…

  17. susi cruz on February 4th, 2013 10:07 pm

    Thank you for doing this for NF…..My son ,Daughter and I have NF1…my daughter and I were there for this.taping…..Great Job spreading Awareness !!!!!

  18. Elizabeth on February 4th, 2013 11:01 pm

    THank you for using this platform to raise awareness for NF. Please consider continuation of the story / related character(s) into further episodes :)

  19. Jaime on February 5th, 2013 1:50 am

    Thank you for doing this. I have NF2, and at the moment I’m in Bethesda participating in a study at NIH for research hoping to help find a cure! God Bless Natalie, and I pray for us all.

  20. kk on February 5th, 2013 6:12 am

    as someone with nf1 i was kinda disappointed.. thought the shows episode would be more about the condition ( i dont really watch tv so maybe its because i dont really know what bones is about ) but at least NF is having more light shed on it.

    Just had 2 tumours removed last Monday and recovering from the procedure.
    Theres a lot of things that come with NF I also have sculliosis. It’s not too fun.. but maybe one day there will be a cure. =)

  21. LRG on February 5th, 2013 12:04 pm

    Just to thank you for getting past your personal grief and allowing the disorder to be made public. My husband has NF and when my daughter was born (33 years ago) we made an educated decision to have just one child when we received his prognosis. He was not actually diagnosed until after her birth when she presented with cafe au laits. While we have been told that she probably doesn’t have an active case, we will counsel her to go for genetic counseling before she starts a family. As you know, and I hope you can share, NF is autosomal dominant (only one parent needs to carry the gene for transmission) and the severity is not predictable from generation to generation. The gene can also spontaneously mutate. I will share with you that, when my husband was diagnosed, we were asked to bring my daughter and him to a medical presentation and, like you, we couldn’t do it. It was still too fresh and painful to deal with. You will become stronger as you learn to educate the medical profession about the disease. Meanwhile, I wish your family the very best as your daughter grows.

  22. Bethany on February 5th, 2013 4:15 pm

    thank you for airing this episode about NF. My 1 year old has NF1 and was diagnosed at birth as he has the same issue as Michaels daughter Natalie, a broken tibia bone. We were shocked and saddened to learn our precious boy had this very scary disorder that we had never heard of. We are hopeful for a cure in the not so distant future and encouraged every time we see awareness being brought to it in such a high profile manner. I truly appreciate Michaels bravery in sharing his families journey with the world!

  23. Austin on February 5th, 2013 7:56 pm

    Wonderful to see NF1 featured in this episode. I have been working with children with NF1 for a few years now, and I love it. I was interested to hear about this as we are currently running a study at the University of Utah (home of some the world’s top NF1 experts) on Tibial Bowing in NF1.

  24. Beverly Jones on February 6th, 2013 10:02 am

    I would also like to thank the BONES crew for highlighting NF. It started in my family as a spontaneous mutation in my mother after the birth of my sister, her first child. This was back in 1951. Since that time my two brothers and myself have NF, my two childern, and three of my grandchildren. We didn’t know about the disorder until after the birth of my son. We have a mild form of it compared to other ways it presents, but it is still hard as we have muliple tumors that are disfiguring. My hope is that making this disorder more well know will increase funding for research into a cure. Thanks again. And btw Angela kissing Booth was just ugly.

  25. Marcia Ravner on February 7th, 2013 7:07 am

    I enjoyed the Roller Derby part, and the “kiss” was just the undercover thing–saw nothing else in it. What did disturb me was that Steeley’s interest in the disease had not explanation, no context, and the bible verse quoting seems to reflect the general thrust to religiosity this season. The seeing through the eyes of the victim episode, and the next one with the near death experience. Please, stop preaching and go back to the scientific gore.

  26. Marcia Coulter on February 8th, 2013 1:56 pm

    I also was glad to see NF brought to the publics attention. My son keith died May 27,2011, He had NF. He was diagnosed at age 4. We were told he would probably have a mild case, Well he didn’t. He had speech problems and learning disabilities. At puberty he started developing tumors. No one ever told us about the possibility of cancer. We didn’t know to watch for signs of cancer. I hope this show starts a movement to help educate people with NF in their family. It’s a very serious disease that takes our loved ones from us and makes their lives very hard. Keith was a very kind person. He was 6′ 7″, we called him our gentle giant, Well come to find out about 3 weeks before Keith died the doctors at UCSF informed us he had Marfans Syndrome. Another genetic disease. Why was this never diagnosed. When you read the symptoms it’s very apparent Keith had this also.Doctors as well as patients need to be more educated. And if they don’t know they need to help you find the answers.

  27. Jennifer on February 8th, 2013 7:43 pm

    I just watched the episode as I taped it…my daughter has already commented but I wanted to add mine…my son & husband both died of soft tissue sarcomas after having NF…my daughter so far has just minor complications & I pray it remains that way..thanks so much for bringing an awareness of this disease to the public..so many people have never heard of it…my son first showed signs at 3 months of age & the Dr then in the ER told me I was a stupid mother not to recognize a “bug bite” which is what he said it was..thank goodness my family Dr knew what it was when he saw him the next week. My husband was 47 & my son 28 when they passed away from the complications of this disease. I hope that more funding goes into finding out more about this & the complications it can lead to.

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    I appreciate it for sharing this good information. I always want and love reading quality subject matter. Keep sharing. Best wishes for the further efforts.

  29. Margaret on May 20th, 2013 9:25 pm

    I came a little late to the party on this. This will be long but I really want to share this.

    I have NF1, with the requisite tumours that have gotten progressively worse over the years. i could live with it if only my body was covered but my face is showing signs that i will soon have a significant “outbreak).

    NF runs deep in my family. My mother & grandfather both had it. I remember one of my moms uncles also had it. Not all the siblings in the family had it but no one liked to talk about it. On my family branch it stopped with me (I was my moms only child) I made the choice at 16 that the risk was too great and I would never put my baby through that. My great uncle had several children, one has NF and so do some of his children and I’ve heard are quite severe.

    I feel very alone so I’m always glad when someone does something to bring attention to this. I often feel like people look at me and think I’m a freak. I also worry about my health but I have asked my doctor if a genetic study becomes available I want in. Thank you for letting me share this (even anonymously) I feel a little less alone tonight.

    Oh and thank you to Dianne for the info on Gillian Anderson – I knew she had done some work fundraising for NF and always wondered why.

  30. Lynn on June 6th, 2013 8:18 am

    I just watched this episode myself, I was stunned when neurofibromatosis was mentioned, I felt compelled to comment. I am waiting for signs in my daughter hoping every minute of everyday she will be clear. I made it 35 years thinking I could never chance it but in the end my earning for children got the better of me. I just pray the condition stops with me. I too have nf with tumors covering most of my body. Thank you for sharing I wish you and your beautiful family happiness

  31. Kelli on October 17th, 2014 11:15 pm

    I am not sure how to go about this. I have NF 1 and I know that there is not enough awareness or understanding about this awful condition. I am trying to get a petition started with change. org. What the petition is for, it is asking Major League Baseball to support NF awareness month and go blue in May. I started the petition about 3 days ago and only have 138 signatures. (most petitions on same site have thousands) Anyways I was hoping that with the help of BONES we might be able to get the link to the petition sent out a little more. Most people think I have been hacked and ignore it or think I am spam. Any help or support would be great! I would love to get this petition supported by thousands of people and hope that the MLB will at least see the petition and consider doing something for NF in May…. Thank you for any help you can do.
    https://www.change.org/p/mlb-go-blue-in-may-for-nf#

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