My dear husband, Pete, works for Ford and we have just been through yet another round of contract negotiations. Every four years, we all hold our collective breath as teams of representatives go through the bargaining process to come up with an agreed upon set of terms for the new labor contract. While we, along with thousands of other UAW families, anxiously searched the newspapers and online media outlets for breaking news about the contract talks and the potential agreement that will affect our lives, I couldnâ€™t help but think of how different this process is from the one that brought PWS into our lives.
With Ford, we agreed to long hours of very hard work in exchange for an agreed-upon wage and benefits package. Correct me if Iâ€™m wrong, but, for the life of me, I donâ€™t remember anyone asking me to consider a contract that would end in Erin having PWS. I donâ€™t remember anyone offering wages, benefits, or a retirement package if we would accept constant health crisis, never-ending doctorsâ€™ visits, years of therapy, constant worry, and an uncertain future. We got the long hours of very hard work, but we had no voice in the negotiations that brought us into the world of PWS. We are working without a contract!
As parents, this is one of the extremely difficult parts of receiving a diagnosis like PWSâ€”the feeling of being powerless, of being forced to accept unacceptable terms, of having no bargaining power. We canâ€™t even go on strike!!! So, what CAN we do? How do we get our voices back?
Mike Stermel, Renay Compere, and Mandy Childs all spoke powerfully to this question recently when they wrote about their fundraising experiences for FPWR. All three of them said that although it took a lot of precious time and energy to put their events together, it was this very work that made them feel as if they were taking back the power that the PWS diagnosis tried to take away from them. Their fight against PWS was giving them back their voices and returning control of their lives back over to them.
This yearâ€™s reward for their hard work, and that of so many others of you, began recently with the arrival of a new batch of 27 project proposals. Theresa is holding gifts more precious than all the Wiis, PS3s, or iPhones in the world put together. She has been given ideas, hypotheses, and possibilitiesâ€”all of which say â€œhopeâ€ to all of us as parents.
A major power surge should come over everyone in FPWR who has supported our fundraising because YOU have made it possible for us to say â€œyesâ€ to as many of these as we have money for. YOUR voices drowned out the shrill shrieks of PWS that try to tell us that thereâ€™s nothing that we can do. YOU made PWS quake in fear at the realization that with every project, we are that much closer to eliminating it from our childrenâ€™s lives. YOU are back at the helm!
While Fordâ€™s future is questionable, FPWRâ€™s is not. Our mission is clear, our will is strong, and our track record is unquestionable. We are doing exactly what we set out to do, and doing it well.
Remember the stories of empowerment that have been shared with us and find a way to join those who are reclaiming their voices, reclaiming their power, and reclaiming their childrenâ€™s future. When the dust settles from the holidays, and as you look at the coming year, think carefully about what you can do to dilute the power of PWS by supporting FPWR. Every event, every donationâ€”big and smallâ€”works together to support PWS research.
As parents, families and friends of precious children and adults with PWS who demand a change of terms in the contract PWS imposed on us, we stand united, arm-in-arm, in solidarity with one other, and we WILL change the world!