The Perfect Storm

You all,

We have an incredible weekend coming up and just thinking of it gives me goose bumps.

From Philadelphia, Pennsylvania, we have the terrific Tailgate Party.
From Dallas, Texas, we...

Time’s Flying!

FPWR Month is in full swing and we have events all of the place! Be sure to check the blue events box on the front page of the website frequently to see what events are coming up.

FPWR Month Update

We are right in the middle of FPWR month and things are going even better than we could have predicted. We have had great success with our first walk in Seattle bringing in $32,000, the second annual walk...

Don’t Let Childhood OSA Go Untreated!

Obstructive sleep apnea (OSA) and other sleep disturbances are common in people with Prader-Willi syndrome. Many studies in the medical literature suggest that the oxygen deprivation and fragmented sleep associated with OSA are associated with deficits in learning....

Chain of Friends

A friend sent this today. It shows a line of little girls holding hands facing the immensity of ocean waves. Alone they might be washed away, but together they stand strong, as do we in FPWR.

Drop Offs

So much anxiety for parents in PWS-world comes from waiting for the other shoe to fall. We've all heard that things would fall apart after our children turned this age or reached that grade. It's no wonder...


Thanks to all of you who have volunteered to help with the Phillies event. It is SO encouraging to see the generous and rapid response given to every request for help that is sent out. FPWR families are...