As most of you know, for over 12 years PWSA (USA) has provided free of charge to new parents of a child with Prader-Willi syndrome an extensive PACKAGE OF HOPE since 2001. That packet includes such things as Nutritional Care For Infants and Toddlers booklet; Growth Hormone booklet; Therapeutic Interventions For The Child With PWS booklet; A Child With PWS – Birth to 3 booklet; Medical Alert booklets; Grandparent booklets; Positive, Hopeful Stories from Young Parents booklet; etc. They also receive free membership and are offered a parent mentor through this program.
Because so many children are being diagnosed in the early infancy stages, we are concerned that often the new parents may get overwhelmed with information. So we have been working on a new project which is a publication called THE FIRST 100 DAYS, that is modeled after a publication created by Autism Speaks. We have the permission of this organization to use their model, and I have seven wonderful medical professional couples who are parents of a child with PWS from ages infancy to three, working with me on different sections of the publication. We have exciting plans for putting this online, distributing across the nation to NICU’s, etc. There will even be a section called “What You Need To Know When Your Baby Is In the NICU”. Of course, we will continue to distribute the important educational materials in our “Package of Hope” but may do more staging of the timing of distribution.
I want to thank everyone for your support of funding and services that makes such PWSA (USA) projects possible. We are still “Hungry For A Cure” but fulfilled in knowing that every single day we make a difference in the lives of so many families, as exemplified an email I just received: “I want to thank you for all your support, advice, and help with Suzie….. I never imagined that things could ever turn out so well. You were such a big help to us and I will always be grateful for that.”
Janalee Heinemann, MSW
PWSA (USA) Director of Research & Medical Affairs