OneSmallStep 5K Walk A Huge Success for Prader-Willi Research

Sunday, August 28, was one of the  hottest and muggiest days of the year in Santa Monica. But the families and friends that came out for the annual OneSmallStep 5k Walk weren't thinking of the weather.  They came to the Santa Monica Airport Park to raise critical research money to combat Prader-Willi Syndrome, the most common, genetic cause of life-threatening obesity. Known simply as PWS, the syndrome strikes one in about 15,000 children, and is characterized by a chronic feeling of starvation, poor muscle tone, stagnation in growth, learning disabilities, and if children are not constantly supervised, their uncontrolled hunger can cause death.

OneSmallStep for Prader-Willi Research was founded, in 2003 by a group of families with children dealing with PWS.  These parents realized that focused research into the nature of the genetic disease was their only hope to improve their children's future. There still is no cure for PWS, but there have been breakthroughs as a result of the $1,600,000 the group has raised in the last 8 years, and the 40 research projects the money has financed.  

OneSmallStep for Prader-Willi Research, has grown to hundreds of families, throughout the world.  Each local group sponsors a 5k walk, the purpose of which is to both raise funds and to heighten awareness of the syndrome.  

Sunday's event brought together families from all over the area.  Each had shared stories  and swapped treatments they had found to work for their kids.  Families were able to support other families, assuring that those attending knew that they were members of a bigger, more unified family.

The Santa Monica area OneSmallStep event was spearheaded by the Compere family, Renay and Tom, a lovely couple, whose son William suffers from the syndrome.  But the event was the work of many: young children, teenagers, parents, grandparents, and loads of friends and neighbors.  Tents and banners were quickly raised, teens manned the registration table, and the walkers donned OneSmallStep t-shirts and began the 5k course around the park.  The Pali High Cheerleaders made sure that the team's spirit never waned, by performing some incredible cheers and gymnastics.

Upon completion of the walk, the group was kept entertained by  singers Didi Pop and Randy Kaplan. Didi Pop brought her two daughters, who charmed the audience with some original songs that got the audience to their feet dancing.

During the concert break, a raffle was held and each drawn ticket was met with applause, and everyone attending felt like winners, even if their tickets were not drawn.

Finally, it was Randy Kaplan's turn to perform his clever children's tunes.  Randy’s act can only be described as the height of "cool," as he sang in humorous voices, his witty rapportee brought huge smiles to  the audience.

The event raised thousands of dollars for research, but more importantly families, discovered kindred spirits, whose support meant the world to those whose lives have been so altered by PWS.

For those that missed the event, it’s not too late to donate to OneSmallStep at http://onesmallstep.fpwr.org/dw/users/renaycompere/santamonica. All funds go to much needed Prader-Willi Syndrome research. Your donations will help assure a better future for some really wonderful children.

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In October, OneSmallStep groups throughout the world will meet at a PWS conference in Marina Del Rey, California. There all the families that held local 5k walks will again share experiences, make new friends, and hear talks from experts in the field.  

One family who will be attending for sure, will be the Pastiloff-Owings-Potter clan.  Rachel Pastiloff Owings has a beautiful son, Blaise, who has PWS  Her sister, Jennifer has graced the pages of My Teen Topix, with her work with kids and the Red Cross. Jennifer will be teaching yoga at the conference.  The sisters' mom, Barbara Potter and her husband Jack were heavily involved in making Sunday's event a great success.  Like many families with PWS, each family member brings their skills and love to the table to work for a brighter future.

Rachel Pastiloff's has written her personal story-- how a young mother lives with the consequences PWS.

Click here to read Rachel's story.

photos by Allan Peach