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Discussion Starter · #1 ·
Hey yall, I saw someone else post a poker run and I thought I would remember to do the same. It's for a good cause, research on the Freeman Sheldon Syndrome, I am a care giver for the family in which one child has this disability. Come check it out, it's mainly for bikes anyways. My friends band is featured there and I can't find my ride's flier so I am just gonna have to post the band thing for now.


I'll try to get the other information posted when I find it, otherwise just IM me for it and I can get it to you.

1,527 Posts
Discussion Starter · #2 ·
Update on the benefit

:smilierr Alright guys, I found my sheet on the ride and thought I would update this, besides it's getting closer to the actual day. Don't have a scanner so I'm just gonna type the info. :twofinger

It's the 4th annual poker run for Freeman Sheldon Syndrome.
$10 per hand, rain or shine, prizes and raffles, there will be food!
Music by: killer clowns, Jones Island Clam Bake and Geoff Landon & The Wolf Pack (I am not singing with them that night so it IS safe to listen to)
Registration from 10am to noon and all hands must be in by 6pm at J& B's Pub and Grill (64th and Main)

Participating Bars are:
Wild Breed (Swiss & St. Martins Rd)
Carries West Side Pub (20385 W. National Rd)
Steny's (800 S. 2nd)
Fast Tracks (2626 S. 68th)
The Bunker (hwy 36-West on Hwy 20)


Freeman Sheldon Syndrom is a very rare muscular disorder. The uneven pull of muscles throughout the body causes abnormal facial features, scoliosis, clubbed feet, fisted or curved hands and contracture of the hips and knees. Respiratory problems, difficulty with feeding and low weight gain can be life threatening during infancy. Many surgical procedures are required to correct these symptoms. With only 130 cases known world-wide, Freeman-Sheldon Syndrom, also known as Whistling Face Syndrome, does not gain much attention. Currently tests and studies are being performed to find better treatment, and determine what causes it. Please help us support the research to find the gene that went wrong.
All proceeds will go to:
University of Utah School of Medicine
Department of Human Genetics
15 N 2030 E
Room 2100
Salt Lake City, Utah 84112
C/O Dr. Mike Bamshad

On a side note, I take care of a little girl with this disease and every year my father's band plays for free for this family. They are like family to me and they organize these rides personally but do not take any money from it. If anyone wants to go I will be there for sure, let me know ahead of time and we'll meet up and head together. :smilierr
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