Was Your Child Recently Diagnosed with Prader-Willi syndrome?
The Foundation for Prader-Willi Research was founded by parents of children with Prader-Willi syndrome (PWS). We know what you are experiencing. If there is one piece of advice that most of us would give to families with a Prader-Willi syndrome new diagnosis, it is to not believe everything you read about PWS. The typical picture painted of PWS is so bleak that it threatens to overwhelm most families to the point of despair. If that is where you are, we are glad that you have found us and we want to let you know that no matter what you have read or heard...
We are here to say that there is hope!
You may have heard or seen grim predictions about the future of children with PWS. PWS is, without question, a complex and challenging disorder, but that does not mean that we are without hope. At FPWR, we believe that there is still much to be learned and much knowledge yet to be applied. We will never, ever stop fighting for our children's right to have the best possible future. All of us have worked through the same process: receive the diagnosis, research PWS on the internet, read mostly outdated information about Prader-Willi syndrome, then aggressively seek out other parents to learn about the future first-hand. We want you to add another step to that process: become actively involved in supporting research in PWS so we can find effective treatment and, eventually, a cure for PWS. That is our goal, and our children deserve nothing less!
Our Children Are Beautiful!
Both on the inside, and on the outside! Please visit our photo gallery to see pictures of children with Prader-Willi syndrome . Browse through our events and look at how beautiful our children are!
The Foundation for Prader-Willi Research (FPWR) membership believes that current research on PWS will provide new therapeutic options for our children and will dramatically change the outlook for those diagnosed today. Our logo's tagline is "Working Toward an Independent Future." We chose this because we believe that with continued focus on research, we will be able to see the day when our children who have been diagnosed with PWS will be able to live independently.
Read more about the available treatments for PWS, and about FPWR and the grants we have funded -- grants that work to improve the lives of those diagnosed with Prader-Willi syndrome, as well as the lives of those who love them.
We are here to help you!
The Foundation for Prader-Willi Research is composed of parents, friends, and relatives of children with PWS, just like you. We are ready to help you, and work along side you, to eliminate the burdens imposed by this disorder.
Our children are beautiful! Just look at our home page or over on the left bar of this page. Their current condition and outlook for the future is much better than any of us could have imagined when we received the diagnosis of PWS. We have a wonderful photo gallery of our children that is available to those who register on our site.
The FPWR is a proactive group, energetically working to secure the future for our children. Our leadership inspires us to get involved and help each other succeed. Please read our Executive Director's Message of Hope and Call to Action for all of us as parents.
Join FPWR today!
You have nothing to lose and everything to gain! We have online message boards where our members discuss PWS research, FPWR rundraising opportunities, and share information, advice, ideas, and experiences related to PWS. We host an annual conference where we set aside plenty of time to discuss the latest trends in PWS research. In addition, we regularly host fundraisers and events across the country to raise money to support PWS research.
Many parents feel that the relationships they develop with other families in FPWR are their guiding light through the maze of life with PWS. In a very real sense, we become like a family to each other. The strength we gain from one another is something we all treasure.
Finally, parents and caregivers who belong to FPWR have made it a priority to become well-educated in matters relating to PWS. Our members share best practices, and our research chair offers up the latest information on PWS research. She is also available to help educate parents individually about research related topics.
Please consider joining FPWR to help make a difference in the life of your child as well as the lives of the many other children with PWS. Journalist Ellen Goodman said, "The central struggle of parenthood is to let our hopes for our children outweigh our fears." Becoming active in searching for solutions for the symptoms of PWS helps us overcome our fears and be the kind of parents our children deserve. Add your voice to ours as we try to accelerate the rate of research and ensure that every one of our children has a healthy, happy life and an independent future!
We are here to say that there is hope!
You may have heard or seen grim predictions about the future of children with PWS. PWS is, without question, a complex and challenging disorder, but that does not mean that we are without hope. At FPWR, we believe that there is still much to be learned and much knowledge yet to be applied. We will never, ever stop fighting for our children's right to have the best possible future. All of us have worked through the same process: receive the diagnosis, research PWS on the internet, read mostly outdated information about Prader-Willi syndrome, then aggressively seek out other parents to learn about the future first-hand. We want you to add another step to that process: become actively involved in supporting research in PWS so we can find effective treatment and, eventually, a cure for PWS. That is our goal, and our children deserve nothing less!
Our Children Are Beautiful!
Both on the inside, and on the outside! Please visit our photo gallery to see pictures of children with Prader-Willi syndrome . Browse through our events and look at how beautiful our children are!
The Foundation for Prader-Willi Research (FPWR) membership believes that current research on PWS will provide new therapeutic options for our children and will dramatically change the outlook for those diagnosed today. Our logo's tagline is "Working Toward an Independent Future." We chose this because we believe that with continued focus on research, we will be able to see the day when our children who have been diagnosed with PWS will be able to live independently.
Read more about the available treatments for PWS, and about FPWR and the grants we have funded -- grants that work to improve the lives of those diagnosed with Prader-Willi syndrome, as well as the lives of those who love them.
We are here to help you!
The Foundation for Prader-Willi Research is composed of parents, friends, and relatives of children with PWS, just like you. We are ready to help you, and work along side you, to eliminate the burdens imposed by this disorder.
Our children are beautiful! Just look at our home page or over on the left bar of this page. Their current condition and outlook for the future is much better than any of us could have imagined when we received the diagnosis of PWS. We have a wonderful photo gallery of our children that is available to those who register on our site.
The FPWR is a proactive group, energetically working to secure the future for our children. Our leadership inspires us to get involved and help each other succeed. Please read our Executive Director's Message of Hope and Call to Action for all of us as parents.
Join FPWR today!
You have nothing to lose and everything to gain! We have online message boards where our members discuss PWS research, FPWR rundraising opportunities, and share information, advice, ideas, and experiences related to PWS. We host an annual conference where we set aside plenty of time to discuss the latest trends in PWS research. In addition, we regularly host fundraisers and events across the country to raise money to support PWS research.
Many parents feel that the relationships they develop with other families in FPWR are their guiding light through the maze of life with PWS. In a very real sense, we become like a family to each other. The strength we gain from one another is something we all treasure.
Finally, parents and caregivers who belong to FPWR have made it a priority to become well-educated in matters relating to PWS. Our members share best practices, and our research chair offers up the latest information on PWS research. She is also available to help educate parents individually about research related topics.
Please consider joining FPWR to help make a difference in the life of your child as well as the lives of the many other children with PWS. Journalist Ellen Goodman said, "The central struggle of parenthood is to let our hopes for our children outweigh our fears." Becoming active in searching for solutions for the symptoms of PWS helps us overcome our fears and be the kind of parents our children deserve. Add your voice to ours as we try to accelerate the rate of research and ensure that every one of our children has a healthy, happy life and an independent future!
