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New Diagnosis

Package of Hope
If your child has recently been diagnosed with Prader-Willi syndrome, we would love to welcome you and provide you with a welcome packet called The Package of Hope. This package includes a variety of publications we believe will help answer many of your questions.

Facebook Group
We would also like to invite you to join the Facebook group PWSA of WI Young Families 0-9 Chat. Please join the group, introduce yourself, and feel free to share any photos of your family. It is a wonderful place to get to know others in Wisconsin and ask any questions you may have. We would love to get to know you and your family!

Annual Meet-up
In addition to the yearly events hosted by PWSA of WI, a special meet-up for families with younger children is organized every summer at the Henry Villas Zoo in Madison, WI. Please check the PWSA of WI Young Families 0-9 Chat Facebook group for updates.

PWSA (USA) New Diagnosis: Membership and Parent Mentor Program
Please take a moment and visit the PWSA (USA) webpage and fill out the New Diagnosis form. PWSA (USA) would also like to present you with a free one-year PWSA (USA) membership (USA only), including a subscription to The Gathered View, their bi-monthly newsletter and other benefits, such as:

  • PWSA Parent Mentoring Program
  • Age-specific online support communities

Contact PWSA of WI

Please feel free to call or text our program director at the office Monday thru Friday from 9AM - 5PM Central to answer questions and provide support.
Call or text: 1-920-733-3077
Email: Progdir@pwsaofwi.org
or send a message using the contact form

Quick List of Resources

Benefits

  • Children's Long-Term Support (CLTS) Waiver Program: The Children's Long-Term Support (CLTS) Waiver Program is a Home and Community-Based Service (HCBS) Waiver that provides Medicaid funding for children who have substantial limitations in their daily activities and need support to remain in their home or community.
  • Katie Beckett (Medicaid): The Katie Beckett Program is a special eligibility process that allows certain children with long-term disabilities, mental illness, or complex medical needs, living at home with their families, to obtain a Wisconsin ForwardHealth Medicaid card

Birth to Three/Early Intervention

  • Birth to Three: The Birth to 3 Program is a federally-mandated Early Intervention program to support families of children with developmental delays or disabilities under the age of three.

Family Support

  • Grandparent E-booklet from PWSA (USA)
  • New Grandparent Welcome from PWSA (USA): PWSA (USA) is here to help and support you as you grow in your role as the grandparent of a child with PWS and offer a free one year membership in our organization, an amazing online support community, extensive encouraging and informative printed materials, and more, to our newly diagnosed grandparents
  • PWSA (USA) Grandparents Facebook Group: PWSA (USA) Grandparents is a sharing and support group for Grandparents of children (of any age) with Prader-Willi Syndrome
  • Parents of Recently Diagnosed Welcome from PWSA (USA): PWSA (USA) would also like to present you with a free one-year PWSA (USA) membership (USA only), including a subscription to The Gathered View, our bi-monthly newsletter and other benefits, such as the PWSA Parent Mentoring Program and Age-specific online support communities

Families and Providers:

Resources listed on this website are provided for informational purposes only. PWSA of Wisconsin, Inc. does not endorse any particular therapy or provider. Be sure to talk with a trusted physician about what interventions and approaches are most appropriate for your child or person with PWS in your care.

PWSA of Wisconsin, Inc. | PO Box 324 Menasha, WI 54952 | (920) 733-3077 | progdir@pwsaofwi.org

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