PWSA (USA) ~ Serving New Parents Every Day!

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

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About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
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2 Responses to PWSA (USA) ~ Serving New Parents Every Day!

  1. Pingback: PWSA New Parent Blog Post | Siena Eve

  2. mczony says:

    13/03/29 January 2013 was a roller coaster/miasma/sludge/discordance of totally unexpected medical and emotional experiences. One thing stands out in my mind: our receiving the “Package of Hope” from PWSA. We were each – individually and collectively – touched with a sense of welcome ( into the gentle hug of the PWSA community ) and the slightest flickering of hope. That said, i confess that no one in the entire household has had the opportunity nor taken the time to read more than two or three of the pamphlets / articles.

    The concept of a “timed release” rather than a bolus of PWS/A information makes perfect sense … congratulations on being so thought-full!

    Since our little Hannah was born early January 2013, her “First One Hundred Days” are mostly behind us … fingers crossed this first segment takes wing as close to immediately as possible!

    Thank you all at PWSA – your support is palpable!

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