PWS Awareness Month- Day 23

Hi Everyone,

Today we are going to talk about the Foundation for Prader-Willi Research!  Andrew and I found them when Kemett was about 6 months old, and immediately decided this is where we wanted to fundraise and donate personally to.  We, along with our amazing co-hosts, are proud to say we have raised over $190,000 in the past two years with our One SMALL Step Walks!  100% of this money goes to research.

When we found FPWR, we found an organization that gave us hope for Kemett’s future.  We also got the added bonus of finding our PWS Family.  At our first conference in 2014, we knew we were in the right place.  It feels so good to be around amazing people who want the same things for their kids and who get it.  They get what you are going through because they are going through the same things.

Two years ago, my walk co-host and I hosted the FPWR National Conference here in Austin.  What a privilege it was to work on this conference, and have everyone come to your home city.  Last year I served as Community Leadership Chair for FPWR which works to connect new families to mentors, resources and provide them with pertinent information through webinars and on private facebook groups.  And last June I became full time staff as the Development Assistant and am now the Donor Relations Manager.

We wouldn’t be doing all of this, if we were not passionate about FPWR and the work that they do.  Below, I have attached their 2015 Annual Report so you can read all about where their funding comes from, the research programs they funded this year and more!

A few years ago there were no clinical trials happening in PWS, but now because of FPWR and everyone who has generously donated we have multiple trials going on, as well as groundbreaking research!  FPWR has also adopted a 5 year research plan that will help accelerate research and development of treatments for PWS.

This is why we educate, spread awareness and bombard you with information all year round.  This is why we ask you for money every year.  It’s because we know they will find something that will allow Kemett to live independently!  Something that will curb his hunger, help behavior and other aspects of PWS.  It’s because the more research is done the more we can understand this incredibly complex genetic disorder.  Please take the time to read the links below to learn more about FPWR.

5 Year Research Plan

2017 Funded Projects

FPWR Annual Report

Thank you to everyone who has supported our One SMALL Step Walk and FPWR in the past and future!

Demand One SMALL Step Fundraising Page

Please let us know if you have any questions!


The Demands




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