New Diagnosis of PWS?

Welcome to the Utah Prader-Willi Syndrome Association. 

We are here for you in your new journey!  
 

  • We are here to help with your child’s medical needs.  Please contact our Prader-Willi Syndrome medical clinic care manager, Debbie Mason at    deborah.mason@hsc.utah.edu 

  • Our PWS multi-disciplinary clinic has 9 clinicians, including genetics, endocrinology, psychiatry, psychology, pulmonology, nutrition, speech therapy, occupational therapy, and physical therapy.  You will meet with the clinic providers once a year and then work with your local doctors throughout the year.  
     

  • Please contact the President of the Utah Prader-Willi Syndrome Association, Lisa Thornton at lisa.thornton10@gmail.com to be added to our directory, to receive financial stipends, to get notice of parent learning conferences, social events, and to volunteer with other parents to help the organization grow stronger!
     

  • Reach out to our support coordinator, Emily Frederickson, and she will help walk you through the Careful Steps or implementing the best practices for the best outcomes for your child with PWS.  
     

  • Click on this Careful Steps for Infants to download an itemized list created by UPWSA to help guide families on the path of caring for your child with PWS.  
     

  • Sign up for the Facebook Parents page for the Utah Prader-Willi Syndrome Association:
    UPWSA – Parents Only, where over 50 parents regularly share crucial ideas and support.
     

  • Reach out to the national organization to complete a new diagnosis form: https://www.pwsausa.org/resources/new-diagnosis/
     

  • Request the vital information from PWSA (USA) in the free Package of Hope offering crucial guidelines on nutrition, medical concerns, and the use of Growth Hormone as a treatment for your child with PWS: https://www.pwsausa.org/resources/new-diagnosis/
     

  • Sign up for national age specific online support organizations:  
    https://www.pwsausa.org/resources/new-diagnosis/

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Utah PWS Multidisciplinary Medical Clinic

Utah houses one of the top medical clinics treating children and adults with Prader-Willi syndrome.  This clinic began in 2006 and provides 9 clinicians including genetics, endocrinology, psychiatry, psychology, pulmonology, nutrition, speech therapy, occupational therapy, and physical therapy.  You will meet with the clinic providers once a year and then work with your local doctors throughout the year, in conjunction with the advice and care of the PWS medical clinic.  

Besides providing medical and therapeutic care for those with PWS, the clinic physicians present at the national conferences, they conduct clinical trials of medications, and they step up to help our families on every front.

Education Team

Utah has the best education team ready to help with any issues that arise for your school aged child, including consulting in advance of IEP meetings, troubleshooting school issues, and training school teachers and staff.  Michelle Holbrook leads this team.  Michelle is a former special educator, is especially adept at problem solving and training teachers and staff on issues relating to PWS.  She has a son with PWS and understands school issues that will arise.  

Legal Team

UPWSA has a legal team ready to consult with your family regarding legal issues that arise, including guardianship, special needs trusts, DCFS issues, and any criminal law matters.

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PWSA (USA) Links

The national PWSA (USA) website pwsausa.org is loaded with many pertinent materials, including:

A blog with current articles 

https://www.pwsausa.org/blog/

 

Medical issues A-Z  

https://www.pwsausa.org/resources/medical-issues-a-z/

 

School success articles  

https://www.pwsausa.org/schoolsuccess/

 

Newsletters 

https://www.pwsausa.org/resources/library/

 

Webinars 

https://www.pwsausa.org/resources/webinars/

 

The Utah Medical Home Portal Link

 

https://www.medicalhomeportal.org/diagnoses-and-conditions/prader-willi-syndrome#ServicesforPatientsFamiliestagless