Sunday, March 10, 2013

Wake Up Nashville 2013

I'm excited to announce that we just got word that this year's Wake Up Nashville  event will be held on July 21st, 2013. 

The past two year's this event has been held in September, but this year they have changed the date to fall on Summer Solstice: the LONGEST day of the year. 

Wake Up Nashville, a Singing and Songwriting Competition created to raise funds and awareness for Narcolepsy, is hosted by Wake Up Narcolepsy, Tabitha Crawford, Bob Saporiti, and many other generous sponsors.  

This year we are hoping to get more People With Narcolepsy to come out and enjoy the event.  

Saturday, March 9, 2013

Narcolepsy Awareness Day

Black Ribbon for Narcolepsy
Narcolepsy Awareness Ribbon

Today, March 9th 2013, is NARCOLEPSY AWARENESS DAY A.K.A SUDDENLY SLEEPY SATURDAY as the clocks move forward and we all lose an hour of sleep. 

Don't forget to move your clocks forward at midnight!! 

March 3rd-10th, 2013 is National Sleep Awareness Week. Please take a moment to view the links below to read about awareness efforts across the U.S. 

3Z Realty and Narcolepsy mentioned in Texas Realtor Magazine (click image below to read the story) 

Texas Realtor Magazine March 2013 Cover

Julie Flygare hosts National Sleep Walk


TUNE IN! Wake Up Narcolepsy Executive Director, Monica Gow, discusses narcolepsy on the Ricki Lake Show

Learn more about Narcolepsy by viewing the brochure below- courtesy of the Narcolepsy Network

                                               HAPPY SLEEPY WEEK!!! 

Sunday, November 11, 2012

Wake Up Nashville 2012

On September the 21st, 2012 Robby and I had the honor of attending the second annual 'Wake Up Nashville' event in the heart of Nashville, Tennessee. 'Wake Up Nashville' is the first Singing and Songwriting Competition to raise money for Narcolepsy awareness and research.

In 2011, Robby and I attended the event and were invited to say a few words about Narcolepsy on stage. We were invited back as Guest Speakers and had the honor of talking about "Living with Narcolepsy" again this year.

Thank you to everyone involved in organizing such a SUCCESSFUL and FUN filled evening, and to the FABULOUS musicians for their involvement and for supporting the cause. I look forward to seeing everyone at Wake Up Nashville 2013!

See the below video of this year's event, videos of some of the AMAZING artists that participated in support of Narcolepsy, and photos from Wake Up Nashville 2011 and 2012.

Wake Up Nashville 2012

Born Sisters

Last year's WINNER- Lauren Ashley


Daisy Dern and David Gibson

Wake Up Nashville 2011- Robby- Bob Saporiti + Me
Robby and I with Bob Saporiti- one of my FAVORITE people in the world! 

Wake Up Nashville 2011 Picture Nashville TN
Robby and I at outside of The Country Music Hall of  Fame- 2011
Wake Up Nashville Robby + I with MTV Producer
Robby and I with Brandon- MTV Producer
Picture Wake Up Nashville 2011
Wake Up Nashville 2011

Picture of Katy Scruton, Monica Gow and Julie Flygare
Me with two of the most AMAZING women EVER-  Julie Flygare and Monica Gow
Wake Up Nashville 2012 Katy and Robby
Robby and I speaking at Wake Up Nashville 2012 
Wake Up Nashville Katy Scruton + Robby Roden on Stage
Wake Up Nashville 2012

Tuesday, November 6, 2012

Funny Narcolepsy Photos

picture of katy sleeping
Fast Asleep in Dog Cage with Party Hat on... Classic! 

Picture of Robby sleeping
Robby and I like to call this "The Xyrem Munchies."

Funny picture katy sleeping
You may stop me from snoring, but you won't wake me up! 

Funny Narcoleptic Photo
Fast asleep with my bestie after a long golf tournament. Despite the 'Cash Bar' sign in the background, we weren't drinking that day (but it is a nice touch).  And they say Narcolepsy isn't contagious? ;)

picture of Narcolepsy Conference
Typical Narcolepsy Conference... I really miss my Narco Buds!! 

Picture of Robby sleeping
Asleep in garage on kayak. 
Needless to say, we didn't make it to the river that day.


Have you fallen asleep in any hilarious places?

Tuesday, September 25, 2012

Robby and Katy to be Awarded National Public Awareness Award

Robby and I are very excited to announce that at this years Narcolepsy Network Conference in Cleveland, Ohio, we will be receiving the 2012 Public Awareness Award for our efforts in increasing public awareness for Narcolepsy. The award will be presented by the Narcolepsy Network, the nations largest non-profit organization that brings together People With Narcolepsy (PWN) and provides information and funding towards sleep education and research.

Unfortunately, Robby and I won't be able to attend the conference to receive our award, although we would love to be there more than anything! We are very PROUD to accept the award as it is something I personally have worked so hard towards since first developing Narcolepsy my freshman year of college in 2003.

We will be accepting the award alongside Julie Fain, who also appeared on MTV's true life episode- I Have Narcolepsy. I admire Julie for her appearance on the show because I know how tough it was putting herself in the public eye to raise awareness for the disorder. Not everyone is kind or mindful of what they say about participants of the show, but Robby and I understand and respect all she did in the name of Narcolepsy. We also admire Julie because she was diagnosed with Narcolepsy only shortly prior to filming for the show. Julie was brave enough to follow through with the filming despite her very recent diagnosis. Read more about this amazing young lady @

Last years Public Awareness Award was awarded to Julie Flygare, a fellow Narcoleptic I look up to and admire for her courage and efforts in raising funding and awareness for Narcolepsy. Julie was diagnosed during her time at law school and managed to handle her Narcolepsy at the same time as receiving a law degree. Julie has since become a huge advocate for sleeping disorder awareness. Check Out Julie Flygare's website @ to read more about this amazing woman and her continued efforts to raise awareness.

To read more about the Narcolepsy Network you can visit their website at This year's annual conference will be held in Cleveland, Ohio from Friday October 19th - Sunday, October the 21st. I encourage all PWN, friends and family of PWN, and anyone interested in learning more about the disorder to check out the above mentioned websites and sign up to attend this year's conference.


Friday, September 14, 2012

Wake Up Nashville

Last year Robby and I had the privilege of attending "Wake Up Nashville," the first ever songwriting competition and concert held in the name of Narcolepsy. The event, organized by Tabitha Crawford and non profit organization Wake Up Narcolepsy, raised over $40,000 towards Narcolepsy research.

This years event will be held on Friday, September the 21st from 7:00 P.M. to 10:00 P.M. at Marathon Music Works located at 1402 Clinton St. in the heart of Nashville, TN. For more information about the event please visit the Wake Up Nashville Website

Below is a video from last years event.

Wednesday, August 29, 2012

Q&A's about Narcolepsy and Filming

I planned on creating this blog immediately following the airing of the True Life: I Have Narcolepsy episode on MTV to help viewers better understand Narcolepsy, answer any and all questions about the disorder, and/or personal questions about Robby and my life. Due to having Narcolepsy and being a HUGE procrastinator, I am only now getting around to posting this. I regret not posting this sooner, but here are the answers/ responses to some of the questions/ comments I have been asked directly or seen online.


"I'm confused about Katy's accent. She sounds British sometimes and American sometimes. But some of her words sound like neither, almost like a speech impediment. What accent is she speaking with?"


lol. I love this question. You are correct, I am speaking with both British and American. I am originally from England and since moving to America I have always found it easier to fake an American accent because when using my real accent I can't even run into the grocery shop without being stopped and answering a million questions about where I'm from.

My Mum and Dad hate when I fake the American accent because they say I speak too quickly and my speech is slurred, hence sounding as though I have a speech impediment. hehe. My British accent is the accent I think in, use when talking to myself, (not that I do that often) and is the accent I naturally speak with, even after living in America for some time now.

It's strange because I have become so accustomed to faking an American accent that it almost comes naturally when speaking to Americans. When speaking with my family and to other British people, or myself, British comes naturally. Prior to filming the show Mum and Dad suggested I use my British accent because I speak more slowly and pronounce my words more clearly than I do with an American accent. I had a hard time with this during filming because the cameraman was asking questions in an American accent, so in the end I just sounded like an odd mix of British/American with speech impediment. hehe. 


Why are you still with Robby if he is not understanding of your Narcolepsy?


Robby is actually VERY understanding of my Narcolepsy because he suffers from Narcolepsy as well. The show failed to mention this tid bit of information. haha. Hence the reason he had no problem napping with me in the scene when we missed my appointment with the Doctor.


Did you meet Robby due to the fact that you both have Narcolepsy?


No. In fact, Robby wasn't even aware that he had Narcolepsy until we met. I realized on our first trip home to my parents house shortly after we started dating, but getting him to accept it and seek medical treatment was a nightmare. Upon our first trip to my parents house he went missing half way through the evening. I walked around looking for him everywhere but couldn't find him. A while later I heard my Mum hysterically laughing because Robby was wedged underneath the pool table fast asleep. Mum joked that the only reason she thought about looking under the table was because she had become accustomed to searching in odd places when I went missing. After many similar instances and noticing that Robby's sleeping patterns mirrored mine, I finally convinced him to see a Sleep Specialist. Robby struggled with fatigue since suffering from mono around the age of 15, but he attributed it to everything but Narcolepsy.


Why didn't the show mention anything about Robby having Narcolepsy?


Due to limited air time and the length of time it would require to tell Robby and my true story in full, it was easier to focus on one side of the story rather than complicate matters. When MTV was filming, Robby had only recently been diagnosed. We were under the impression that they were filming us as a Narcoleptic couple. There were hours and hours of footage and the entire time we thought that the story was going to portray Robby starting his medication while I attempted to cut back on mine. There was plenty of footage explaining his narcolepsy, but to our surprise, they didn't use any of it.


If Robby has Narcolepsy why wasn't he more understanding of the fact that you need your medication?

The real Robby is a much nicer person (most of the time. haha) than he appeared on MTV. The truth of the matter is that I really did need to cut back on my medication at that time, and it was a great reason to do so. Robby and I had many talks and arguments before and during filming because I was taking FAR too much medication and he wanted me to cut back. At that time, I honestly believed I needed the amount of medication I was taking because I forgot that even people without narcolepsy become tired when their body needs rest. Instead of getting the rest I needed, I popped another pill because I attributed the tiredness to my Narcolepsy. Luckily, I have learned to listen to my body and take naps and rest when needed, and I have cut back my current medication intake to a quarter of what I was taking.


If Robby has Narcolepsy why wasn't he more understanding about you struggling to wake up, etc.?


The truth is that Robby is very understanding, but when living with someone else that has Narcolepsy and you are both exhausted all of the time, it’s hard to always be there for each other. During our filming, Robby was dealing with starting medication himself and was tired of having to help me out while trying to control his own Narcolepsy. You would think that we would be really understanding of each other, but it's hard when both exhausted all of the time. It actually causes more fights. 


"It kind of grosses me out everything is served to Katy in that birthday girl mug."


It kind of grosses me out too. lol. Robby has this theory that everything with liquid should be eaten out of a cup. That cup was made for me as a birthday present about 7 years ago and Robby loves it because he can fit more cereal or soup in it than he can a bowl, and then he can drink the liquid and save having to dirty both a cup and a bowl. That's his theory anyway. On the occasion that he does "serve" me out of the mug, it grosses me out because he is forever using that darn cup and only ever rinses it out with a splash of water. haha. :)


"How many people were hoping she would fall flat into that food at 15:47 LMAO!"


This comment was posted on the MTV website. I love when people think they are ridiculing me by making fun. What they don't know is that I am the first person to laugh and make fun of myself. Yes, that would have been hilarious if I fell flat into my food, but if you think that is funny, you should hear the real stories that have happened under similar circumstances.


What is your most embarrassing Narcoleptic moment? 


Good question. That is a tough one as I've had far too many embarrassing moments to pick one in particular, but one that stands out is the time I was cheering at a college football game and had cataplexy in the middle of the field during the national anthem.

The entire team was aware of my Narcolepsy/Cataplexy and when bored, the fun thing to do was to see who could make me fall down first. I know it sounds really mean, but everyone on the team was honestly very supportive of my narcolepsy and would never let me hurt myself. Sure it was embarrassing at times, but it's what kept me in good spirits and kept me laughing instead of being depressed about the disorder. On this particular occasion, my stunt partner was standing behind me during the anthem and made a really funny comment that made my entire body go limp. He put his arms underneath my armpits and made sure I didn't fall down completely, but I stood there in the middle of the field at a sold out football game hanging like a rag doll in my partners arms.

After the anthem was over I managed to gain control of my muscles enough to make it to the side lines. The medical trainers rushed over to me because they thought I had fainted. I felt all eyes in the stadium on me, which caused me to laugh more and go further into cataplexy. Embarrassing, yet hilarious.

Please feel free to ask additional questions or post comments. I will do my best to answer each and every one of them (even if it does take me a year). :)