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.
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.