Hi, and thank you for visiting Pablo's fundraising page!

Reuben and I have been very busy planning the second annual One SMALL Step for Prader-Willi Syndrome walk in Paris.  We are so excited about many things.  Research as it pertains to genetic diseases (such as PWS) is advancing and yielding very promising future treatments.  And Pablo is happy and thriving!  But we can see the dark side of PWS on the horizon for our sweet little man.  Only very recently he has started to ask for food again after a full meal, and repeating the words we've been dreading for 4 years, I'm hungry over and over at times.  Not only is it heartbreaking as a parent, because your child is suffering (if constant hunger isn't suffering I don't know what is), but I just can't imagine what it feels like, to be starving, 24 hours a day, can you?  We've learnt a great deal since Pablo's diagnosis, the different hormones that play a part and communicate the messages we take for granted within the body.  Science is only just starting to understand this very complex system, much more research is needed to find out what is "broken" in the neural pathways in PWS.  It is my strong belief that a deeper understanding of what is is "broken" in PWS will serve the general population and the obesity epidemic that plagues our modern society.    

The Foundation for Prader-Willi Research is making a difference.  For the last 3 years we have stood witness to it.   At first from the sidelines, and now with a very active roll, from participating in a walk, attending  conferences, hosting fundraising walks, helping to select future research projects as a family advocate.  We can tell you first hand that there are very exciting research projects taking place at this moment, and others that are waiting in line, just waiting for the research dollars!!!!  Potential cures for our kids!

Your donation great or small can and will make a difference, thank you for your support, and for taking One SMALL  Step with us towards the day that all people with PWS can look forward to an independent future.  

A cure for PWS is not a wistful dream by a group of parents, take the time to inform yourself and see the concrete advances in research, then choose to believe with us.

http://fpwr.org/blog/research/11/12/oxytocin-promising-potential-treatment-pws-opportunity-help-advance-next-step

With much love and hope,

Reuben, Rachel, Elias and Pablo