In many ways, creating useful resources to support the quality of life and care of people with Prader-Willi syndrome (PWS) is one of the most important ongoing tasks of PWSA (USA). Visitors to our office are often impressed by the size and scope of our Resource Room which houses many of the publicatons and videos we regularly send out across the world to support people living with PWS.
The PWSA (USA) Resource Room
What’s not as obvious is the amount of time and work that goes into creating these fabulous resources. If a donor is wondering how their money makes a difference through the work of PWSA (USA), resource development provides a substantial part of the answer. It takes an enormous amount of staff time to create a good resource. Whether it is coming up with an idea through our crisis, family support or research program or taking that idea to the next step of development – the staff at PWSA (USA) play a crucial role in nurturing the process along. From recruiting and bringing together volunteers and professional experts to contribute to the content of a resource all the way to (in many cases) publishing in house the resource once it is developed. And then there is the challenge of spreading the word about a new resource, taking and filling orders, and as time marches on revising and updating a resource as needed. So every time you see a new video, publication, or alert, available through PWSA (USA), remember that this represents the end of a very long journey of development. It often is a tedious and not very glamorous process but it is an essential part of filling our mission.
A good example of the value of this process is the PWS Best Practices Guidelines
which is one of the most exciting new resources in years and is the culmination of collaborative work done by PWSA (USA) and others from the PWS community across the world who participated in the International Prader-Willi Syndrome Organization
Caregiver Conferences over the past two years. Between the conferences, international teams worked tirelessly to advance the development of this incredible repository of PWS information.
PWS Best Practice Guidelines CD
Available in book or CD versions ($55.00 each), this resource contains over 200 pages of timely information for parents, caregivers, teachers, residential and other providers. It includes strategies for behavioral management, school and employment success, crisis management, improved nutrition, better exercise, enhanced communication between families and caregivers, and so much more!
I am particularly excited PWSA (USA) is part of distributing this groundbreaking resource to the PWS community because in 2008 as a PWSA (USA) Crisis Counselor I was privileged to participate in the first of the conferences convened to produce this resource in Herne, Germany. It was an amazing opportunity to share ideas about how we can improve the quality of life of people living with PWS in every country. I came away with a strong sense that this type of interaction with the international PWS community on issues of support is a terrific benefit for the PWS community in the United States. And I am so happy to see those conversations at the Herne conference and beyond now easily accessible for all to benefit from in this exciting resource. So I hope you will give strong consideration to ordering the PWS Best Practice Guidelines by calling 800-926-4797.
PWSA (USA) Executive Director