2019 Silver Creek, NY

Team Evan

It is time again for our 5th annual One Small Kick event! We continue to work to raise money for the Foundation for Prader-Willi Research so that one day Evan may live an independent life. FPWR contitinues to fund progressive research that leads to a better understanding of the mechanisms behind the challanges faced by a person with PWS. And that list is long! We have much work to do and are always so grateful for the continued support of our family and friends who generously donate to our cause. So we ask you once again to donate with the knowledge that you are making a tremendous impact in our lives and the lives of everyone who is touched by a person with Prader-Willi Syndrome. To learn more about what research is being funded by the organization visit www.fpwr.org.

On a personal note, Evan has had a great year so far just finishing his 6th grade year. He continues to do taekwondo, hippotherapy and speech therapy weekly. He continues to wear his scoliosis brace nightly to help prevent his curve from getting worse. Also, he is in a clinical trial at Vanderbilt University so we have been enjoying some travel time and getting to know other PWS families from across the nation. This trial, and others happening this year, leave us filled with hope for a future where Evan will have the opportunity to live unburdened from the constant hunger and have some personal freedoms that only come without 24 hour supervision.

For everyone that will be joining us on July 21 for some kickball fun, know this....Evan is ready for some kickball and he is also looking for a team that is going to take him to the champioship level. This kid is hard core, and after being on the 1st place team for the last 2 years he expects nothing less for this year!

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