Why Utah PWSA


Utah PWSA has a really good chance to win $250,000 in the Vivint Gives Back contest on Facebook, but we’ll need your help to do it!

In this year’s contest, each voter may vote only once per day – not once per day per region. That means that our best chance of winning the grand prize will be to have most of our “PWS family” cast their votes for just one PWS organization.


Why vote for Utah PWSA?

Utah PWSA built a strong base of daily voters last year to win the grand prize, so, among PWS organizations, we think they’ll have the best chance of winning the grand prize this year, especially if we can mount a national and international effort to support them.

Utah PWSA will be using the money it wins to fund projects that benefit everyone with PWS, including the Careful Steps project – a web-accessible PWS care management project Utah PWSA has been working on in collaboration with PWSA (USA) that aims to provide daily, step by step help to every family in the US (and the world!) who is impacted by PWS. The plan is to have the software cover all areas of care including medical, behavioral, food security, educational, legal, therapies, etc.

For instance, each step of care in the software would take you automatically to the references that pertain to that topic, such as articles in the Gathered View (PWSA (USA)’s newsletter), medical consensus statements, abstracts, or Management of Prader-Willi Syndrome textbook portions that relate to that step of care.  For example, the software might direct you to discuss with your doctor whether your child’s thyroid function should be tested, and then the corresponding references would pop up from Gathered View articles, the text book, abstracts, or any other relevant and accurate source dealing with thyroid function as it relates to Prader-Willi syndrome.

So, a vote for Utah PWSA is really a vote for all of us.


What about the other PWS organizations that are competing in the contest?

We hope all the PWS organizations that are competing in the contest do really well. If we have enough total PWS-related votes to have one win the grand prize and others win their regional prizes, that would be fantastic.

So let’s all make every effort to vote in the contest and get everyone we know to do the same.