Recently, Theresa Strong posted a notice about a new Prader-Willi syndrome research mouse model that came from the work of Uta Francke, a world-class researcher that FPWR has funded. After reading about the success of this mouse model, I realized that I had never felt such affection for mice as I did at that moment. 🙂

One of my most vivid early memories of PWS was, year after year, watching the same slides of puny PWS mice, hearing reports of their short lives, and knowing that they were in that shape because they had the same diagnosis as Erin. How depressing was that?!! Those rodents are still painfully seared into my memory and I will gladly replace that image with one from Uta Francke where I can see them walking around and living!

This is such incredible news and you're absolutely right. It does remind us exactly why we do what we do. Early on in FPWR, we were challenged in our fundraising by our lack of a track record. In the hearts of those of us who held the vision of a PWS research foundation, we knew we could raise money and support research, but we had to convince the rest of the world that we could do it. Now, it's beyond question. We have said that we could do this, and we are doing it. Further, we will continue to do this until PWS is a distant memory. From where I sit, there's not a minute to lose!

Earlier this year, when we went to see Jennifer Miller and Dan Driscoll for the PWS study, we spent a couple of days at Disney. While there, we heard another famous mouse declare this to be the "Year of a Million Dreams." I hope that Mickey is right. I hope that this year, or next year, or whenever, is the year our dreams come true. And we can make things easy for Mickey. We dont' need a million dreams. We have only one dream, and although it's a big one, it's not too much to ask. We dream of the day when PWS is POWERLESS in the lives of our children. Nothing more, nothing less.

Now, here's the good news. Our dream is not only possible, but is ours for the taking. There's no Disney magic to this. The money we have raised made this particular living PWS mouse model possible. Without the work of FPWR, Theresa would not have had this news from Uta Francke because Uta Francke would not have had the money to produce this mouse. Further, the secrets that this living PWS mouse holds cannot be discovered unless Uta Francke, and others like her, have the money to continue their work. If we want to know what is going on with that mouse, we have to continue to provide the researchers with the funds to do their work.

Friends, when it comes to researchers, the reality of the situation is "if we've got the money, they've got the time." Personally, I'm thrilled that all they need is money. How horrible if they didn't have ideas, if they didn't have projects, if they didn't have work that gives us so much hope! We can get money. The only question is how fast. How long will it take us to raise the kind of money we need to get the help that our children need? How long will it take us to contact those we know who have resources to help us, or to contact those who have connections to others with resources? How long before we stop waiting for someone to do it for us? How long before each one of us asks ourselves, "What can I do?"

Early intervention is wonderful. GH is a godsend. Good nutrition, supplements, appropriate meds increase the quality of our children's lives, but they still have PWS! Every single day, we are reminded of how this diagnosis wreaks havoc in our children's lives, and in our own. Every single day, we worry about the future, about our children with PWS, and the effect of PWS on their siblings. Every single day, we fear our own mortality. No one should have to live like this, and if we keep working to accomplish our mission, some day, no one will!

I am so very thankful for the spirit that drives all of us as FPWR families. We should take pride in what we have done and the work we have produced. We are an amazing bunch and let's never forget that! Our task is not easy, but we are motivated by a kind of love that strengthens and nurtures us, the pure love of our precious children. Let's keep the thrill of Theresa's report in our hearts as we move forward into an exciting year and allow the power of that little mouse to help us create a better life and a new future for everyone affected by Prader-Willi syndrome.

all the best,

Rachel

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