In Sports Applications, Videos

January 03, 2010

Video Article

CrossFitters aren’t big on giving up, so when Kurtis Bowler discovered his son Casey has a condition called Fragile X, he fought back.

Bowler is the owner of Rainier CrossFit and a strongman competitor, so he decided to fight fragile X with fitness. In 2006, he organized Rainier CrossFit’s Strongest Man and Woman contest to raise money for Fraxa, a research foundation working on treatments and a cure for fragile X, sometimes also referred to as Martin-Bell syndrome. The most recent competition was held Aug. 1, 2009, in Sumner, Wash., and to date Bowler’s contest has raised $25,000.

Fragile X is the most common inherited cause of mental impairment, and symptoms can include everything from mood disorders to learning disabilities to seizures and beyond. Fragile X is also a common cause of autism. The condition is hereditary and can be traced back to one gene (FMR1) that was identified in 1991.

In Part 1 of this two-part series, Bowler talks about his son’s condition and the challenges Casey faces.

To learn more about Fraxa’s research strategy, visit Fraxa.org.

Video by Again Faster.

6min 50sec

Additional audio: CrossFit Radio Episode 87, originally aired Oct. 2, 2009.

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Comment

11 Comments on “Being Strong for Fragile X: Part 1”

1

wrote …

Tony,
I know that the purpose of this journal entry is not necessarily to educate everyone on all the particulars of Fragile X but please understand the the statement within the entry that states "Fragile X is also the most common cause of autism" is inaccurate. I do not believe that there is any published data which would back this statment up. If there is could you cite it? I just want to make sure that nobody is considering the statement as fact.
Thanks,
Bill

2

Patrick Cummings wrote …

Bill, while my experience with Fragile X doesn't extend beyond talking with Kurtis and Laurie Bowler and working on this video, I can cite this fact from fraxa.org:

"Fragile X syndrome is the most common inherited cause of mental impairment and the most common known cause of autism. Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups (source Centers for Disease Control). About 1 in 259 women carry fragile X and could pass it to their children. About 1 in 800 men carry fragile X; their daughters will also be carriers."

Perhaps your issue with the statement (or the video's issue, depending on how you look at it), is either with the word "inherited" or in the phrase "most common known cause".

Again, my knowledge of this is very limited, but I hope that helps a little.

Best,

Patrick
againfaster.com

3

wrote …

Great video, great interview and most importantly it's an example of the great people and causes this community can and should support. Go Bowlers!

4

wrote …

Wow. I thought you were strong because i watched the video where you did "Jackie" and you beat my time even though you have 30lbs on me. Well... there is strong and then there is strong.... My wife is 10 weeks pregnant. I can't imagine to assume i would have the same strength, grace and dignity you have demonstrated if faced with the same hardships. I live in Enumclaw and spent most of my teenage years in Puyallup. I will be CERTAIN to visit your gym and if you would be so kind, i would apprecitate the opportunity to learn from a man of your character, and train with your athletes. -Best Wishes

5

wrote …

Thanks Patrick. Firstly, I think what the Bowlers are doing to help their son and others with Fragile X are awesome and should be commended! I hope that the work being done by Fraxa can lead to the breakthroughs which Mr. Bowler alludes to regarding the genetic marker identification and modification. The shear concepts of the ramifications which a breakthrough like that could have are infinite.

With regards to the Fragile X/Autism link I made my comment because one of the major problems in the Autism community is misinformation. There are many theories out there regarding what causes Autism but there are no definitive conclusions that have been made based on scientific studies/data. While a child with Fragile X may very often have Autism like symptoms or become diagnosed with Autism itself a child with Autism does not necessarily more often than not have Fragile X.

Please understand that I am in no way trying to start a debate about this. I was just trying to clear up any potential misconception that could have been perceived by the viewers.

Thanks,
Bill

6

wrote …

Hi Bill,
Somewhere between 2 and 6% of kiddos diagosed with Autism actually have Fragile X. Getting those kids tested has been the hard part for 2 reasons: there is guilt associated with being the carrier that passes FX onto your child and many parents simply won't face that and 2) for whatever reasond doctors don't know to or won't test. Our DX was delayed by scenario 2.


That 2-6% number represents the most common KNOWN, SINGLE GENE cause of Autism. (emphasis mine) That is neither inaccurate nor "misinformation". Perhaps, above, the wording wasn't specific enough.


A few websites that hold the information you are seeking: www.fraxa.org www.fragilex.org, and a search for Randi Hagerman out of UCDavis's MIND Institute who is a researcher specializing in molecular genotype and their resulting behaviors. She and her husband are beacons of hope for families like ours. Her published works will certainly back that statistic. One can start with this PDF: http://www.fragilex.org/TheRelationshipbetweenAutismandFragileX070413MO1.pdf


Roughly 30% of children with FX also fall on the Autistic Spectrum.


We are humbled and thrilled that we got to spend a few days with Patrick from Again Faster, he stayed with our family, played with Casey, and filmed Mt. Rainier's Strongest Man and Woman and its preparations. Patrick, friend: Stunning. Thank you. I'm misty and speechless.


Laurie

7

wrote …

This is just an outstanding video. Kurtis and Lori Bowler represent to my mind the very best that CrossFit has to offer. A full time police officer yet Kurtis is always willing to help especially new CrossFitters and new gyms. Lori is of the same mind and to watch the interactions with Casey is just awesome. We are so very lucky to have this outstanding family in our local community. As an otolaryngologist, I could tell that Casey had a profound hearing loss, but did not know much about Fragile X. This was very informative and well shared. To Elijah above, you would do well to visit with the Bowlers, they are what character is all about!

J. James Rooks, JR MD

8

Chris Cavallerano wrote …

Kurtis, you may not have heard the word, "Dad" from Casey yet but it will come. It is clear you and Laurie are amazing parents with hearts to match. Don't be surprised when Casey adds the words, "Hero" and "Super" when referring to you two. I and many others certainly do! Thanks for sharing your story and thanks to Patrick for pulling it all together for the CrossFit community and beyond.

9

wrote …

Hi Laurie,
Thanks for the additional info and good luck to you and your family in all that you are striving for!
-Bill

10

wrote …

Thank you all for the kind words. Casey is the strong one, I learn something from him almost every time we are together.
Elijah, stop by any time.
Kurtis (even though it say Laurie)

11

wrote …

No matter how crappy my day is, when I walk into RCF and see Casey smiling like no other, it automatically brings a smile to my face. That first day I got to Washington and visited RCF to find a box to crossfit in, he comes up and shakes my hand. Great kid and I do miss him, I need to go back and visit and stop bullsh^tting

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