As some of you have already said, there is so much to be excited about in the 2008 DC Conference. Let's look closely at why we should be excited about this.
We are all members of FPWR because we want to accelerate the pace of Prader-Willi syndrome research . So many of us work very hard to raise funds and increase the number of projects that we can fund each year. Picking up the pace is SO very important. It's hard enough to see the lack of PWS research when our children are younger, but as they grow older, we really feel the need to work at warp speed because the stage is being set for adult life. As we all know, it will get here quicker than any of want and we must do as much as we can as quickly as we can.
I was personally reminded of this recently because Erin just turned 12 last week. That seems absolutely impossible, but the reality is that she is headed, full steam, into her teen-age years and from there, into adulthood. How do we pick up the pace in time for it to make a real difference in her life? How do we do that??? Wishing won't make it so. We can all sit around until the cows come home, hoping that "somebody does something" about Prader-Willi syndrome , but the truth is that nobody is going to do anything for us. As unfair as it is, if anything is going to be done, it's all up to us. That being said, what can we do?
The DC Conference is a wonderful way to speed up PWS research. This effort will give us an opportunity to join together, rally the troops, and make our voices heard on Capitol Hill where those with the ability to channel some serious dollars in our direction cannot ignore our combined strength! Many of us have been talking up PWS research to our representatives over the years, and that is important, but if we ALL do this, ALL at the same time, we can RAISE THE ROOF and get their attention in a big way.
We know for a fact that those of us in FPWR can make a difference in PWS research. We know this because we've already done it. The work of FPWR has dramatically accelerated privately-funded PWS research as the following chart shows.
As you can see, after 2003, the year that FPWR began, Prader-Willi syndrome research dramatically increased. It's perfectly understandable if you gasp when you see this, because everyone who has seen it so far has had the same reaction. 🙂 Take a long, hard look at this and feel your heart swell with pride at the results of the work that we have done together. It's your work and your sacrifice that has caused this explosion in the quantity and quality of privately-funded PWS research. You have every right to be so very proud of what you have done!
Now, the time has come to cultivate the field of publicly-funded research. If we have the same effect on publicly-funded research as we have had on privately-funded, we will be able to fund PWS research at a whole, new level. We can say YES to more projects, to bigger projects, to better projects, and, through this, WE CAN BRING Prader-Willi syndrome DOWN!
Those of us with older children know that when they were born, there was nothing for us to hope for aside from group home placement. As much as this option has been a godsend to many families, it is NOT the cure for PWS. It is SO not enough! We can do better by our children than this. They deserve every chance to have the life that they should have had without PWS. The 2008 Conference is an important step toward making that happen.
Let's join our voices, our energy, and our strength together to STORM Capitol Hill, and let them know that we are here and we need their help. While this is what we ALL need to do, there are a few things that they need to understand that we will NOT be doing. We will NOT be quiet! We will NOT accept mediocrity! We will NOT take "no" for an answer! We are NOT going away! Mark this date on your calendar now and help us make our message crystal clear!
Over the years, we have learned a little something about perseverance from our children. 🙂 Let's perseverate on the idea of our conference theme–Lead the Way…Change Their Future! Repeat it over and over until it is seared in your memory banks. Let no one tell you that you need to sit quietly, trust others to speak for you, or accept their predictions of a dire, unchangeable future for your children. YOU have power! YOU have a voice! YOU can lead the way! YOU can change the future!
See you in DC!
change the world. Indeed, it's the only thing that ever has." –Margaret Mead