As most of you are likely already aware two years ago our Grandson Nicholas Joncas was born with Prader-Willi Syndrome.
This terrible affliction has multiple debilitating effects yet due to its relative rarity (estimated at 1 in 10,000 to 15,000 births) it attracts little in either governmental or private industry research funds yet research offers great promise for mitigating or controlling the worst of its conditions.
On Saturday, June 2 we are holding a One SMALL Step Walk For Prader-Willi Syndrome Research. This event will transpire at Johnny Cake Ridge Park East in Apple Valley and will last from 10 am to 2 pm.
We will feature speakers, prizes, raffle drawings and refreshments. The walk route is just one mile so all can participate - or just join us at the host picnic shelter. WCCO has taken great interest in this and will be covering it with a reporter and camera crew.
Please come and join us in person but if you can't make it please consider making a donation on behalf of Nicholas and all children afflicted with this terrible genetic condition.
Russ (Grandpa) and Jane (Grandma) DeFauw
All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.org/.