Welcome to the Utah Prader-Willi Syndrome Association. 

We are here for you in your new journey!  
 

• We have two Family Support Coordinators who can help with your child’s needs. If your child is 17 years old or younger, please contact Brooke Ramos at brookeramos@upwsa.org (480-528-9270). If your child is 18 years old or older, please contact Christy Brown at christybrown@upwsa.org (801-580-1405). We are here to help with any questions you may have.

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• 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!
   

• 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 and sign up for age-specific online support organizations: https://www.pwsausa.org/resources/new-diagnosis/
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• The National Prader-Willi Syndrome Association (PWSA/USA) has a very helpful and robust "Resources A-Z" page that can be reached here:
  https://www.pwsausa.org/resources-a-z/

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