One line in your reply to Stephanie got my attention. You said, "You made a difference in my life." From where I sit, there's no higher compliment than that. It's important for at least three reasons.

First, Stephanie was involved in helping you through a difficult time, the early days of your all's PWS diagnosis. We all know the blackness of those days and remember the folks who helped and even those who didn't. As you said, she made a difference in your life.

Second, helping you helped Stephanie. An essential element in our own healing comes when we are able to help someone else down that same painful pathway. It hasn't been all that long since Jake was diagnosed and here she is, already helping others in a big way. It is one of the most empowering
experiences to be able to help another parent with a broken heart, another parent who thinks that life as she/he knew if is over, and, in turn, help a precious, innocent child who has been dealt a lousy hand. How often do we get to do that outside of the PWS arena? I really believe that it is a part
of the healing process that nothing else can replace. Now, you made a difference in her life.

Third, and in another sense, this intent to make a difference in the lives of others is exactly what FPWR intends to do. We work not only for our own children, but for thousands of children we do not know and will never meet. We work for today's children and tomorrow's children, and their families.
The results of the research that we are funding will cascade through future generations and keep them from having to go through the kind of pain that we have all experienced.

Although I am so thankful to groups like Pharmacia/Pfizer for the development of GH for use in PWS, I can't help but
think how Erin's life might have been different if even more serious work had been started years ago. Since I can't change that, I don't dwell on it, but it does prompt me to do everything I can to see that no one in the future suffers needlessly.

Keeping focused on our work, letting nothing or no one distract us from our mission, we WILL make a difference in the lives of our children and chidren yet to come. I am thrilled to be a part of this group and thank God for each one of you and all you are doing to change the future. So thanks, Tiffany, for your reminder of our goal and of the importance it holds to all of us.


Your email address will not be published.