Friends, we at FPWR are the FOUNDATION of research in Prader-Willi syndrome. Our bold commitment and our excellent work has raised the bar for PWS research, and this is just the beginning! In only four funding cycles, we have supported 19 research projects in PWS. ALL of this work would have gone undone if not for FPWR, if not for YOU! Each and every one of you has played a part in making FPWR the leader in PWS research. Whether you made a donation, held an event, worked to increase awareness, or bought FPWR merchandise, you contributed to the force that can change what it means to have Prader-Willi syndrome. Many, many thanks for all of the work that you have done, and that you continue to do. What an inspiration you all are!
Thanks so much, Theresa, for the countless hours you put into managing this entire grant process. Thanks, too, to all the reviewers who generously shared their time and energy to evaluate the projects. One of the many incredible features of FPWR is that parents actually participate in the selection process of projects. It is very important that the work we do be scientifically valid AND be potentially applicable to the lives of our children. It's all well and good to be able to add to the body of knowledge about PWS, but we are parents, not just objective observers, and we are looking for answers that will apply to our children's health and happiness. I really love having parents in a position to give input as to the merits of the work we support. That's not a feature you find in very many organizations like ours.
Now, even before the ink dries on the contracts, we all need to be thinking of what we can do to maintain this momentum. Our membership has been growing by leaps and bounds. Our ability to fund more projects has increased, but, friends, the reality is that we still have a long way to go. Our children still have PWS and until that changes, we have so much work to do. Set aside some time to focus on finding ways that you can help support PWS research through FPWR. Maybe you can hold an event, or work together with others to hold one. Maybe you can make a connection with those who have the ability to make a significant donations to FPWR. Maybe you can speak to your elected officials about supporting legislation to fund PWS research. Maybe you can think of a hundred ways to make this work flourish. Every one of us can do something! Ask yourself today, "What can I do?" and keep on asking the question until you find the answer. Our children are depending on us to do our best and we will not let them down!
THIS is what it's all about, my friends. Theresa's post is why we at FPWR do what we do. Set your sails to whatever type of fundraising floats your boat so we can read these kinds of reports more than once a year. As Theresa says, "It's not for a lack of good ideas that we don't have more PWS research. It's just for a lack of money." The scientists and researchers are ready and willing to help us cure PWS, but they need our help.
Today, let's all stop what we're doing for a moment and commit ourselves at the highest level possible to give the researchers the support they need to do the work necessary to help our children. We're all busy. We're all stressed. We all have children with PWS and that should be enough. In a perfect world, we would not be asked to do fundraising for PWS. In a perfect world, our children would not have PWS. Since we haven't found that world yet, we have no choice but to do everything we can with both the opportunities we encounter and those we create to raise funds for PWS research and broad awareness of our issues.
Again, what a wonderful day for PWS research–one of many that we look forward to until the time comes when PWS is added to the books of medical history as something that people "used to have." FPWR is the best way to get us to that point as soon as possible!
Even if you've already read Theresa's post from cover to cover, take a minute and read through the list of projects again. Also, read through all the other work that FPWR has funded and you will be inspired. http://www.fpwr. org/research/ grants/summary Thinking about what we have already done and all the good work that remains to be done, we boldly move ahead toward a world where we no longer have to do fundraising because our children are free of PWS. Together, we will do whatever it takes to make that happen.