Your New Journey
Get Information
Explore the Parents section of this website, especially the section for the age of your child. Call us with any questions or if you don’t find what you’re looking for. Join PWCF to stay informed about the newest information about treatments and statewide events and activities. Contact the national Prader-Willi Syndrome Association | USA to request their Package of Hope.
Connect with Other Parents
Because we know how helpful it can feel to speak with someone who really understands what you’re experiencing, we can connect you with other parents to the extent you feel comfortable. We maintain a Parent Mentor Program and can connect you with a parent of a child of similar age or even in your city. We host quarterly Parent Sharing and Information Exchange Groups on Zoom, organized by the child’s age, that are open to all PWCF members. And as soon as we’re able we will host in-person share groups once again. Just let us know how you’d like to connect! We also encourage families to join one of PWSA | USA’s Facebook groups; just contact PWSA | USA directly at 800-926-4797 or info@pwsausa.org.
Learn About Growth Hormone
Growth hormone therapy (GHT) is now the standard of care for treating the symptoms of growth hormone deficiency in children caused by PWS. While GHT is not a cure for Prader-Willi syndrome, it is a treatment to reduce many of the syndrome’s physical symptoms and therefore may be the right journey for your child. Review the information on Growth Hormone Therapy under the Parents tab and elsewhere on this website.
Start Appropriate Therapies
Infants and children with Prader-Willi syndrome benefit significantly from various therapies including the “core therapies” which are occupational therapy, oral-motor therapy, physical therapy, oral motor therapy in infancy, and speech and language therapy as your baby ages. Other therapies, including infant stimulation therapy, vision therapy, and later, social skills therapy, may also be helpful. Services will vary depending upon your child’s unique needs.
Find an Endocrinologist
Your New Journey
Our website is one of many tools at your disposal. We encourage you to explore the website, come to a support group meeting or other event so you can meet other families and become a member so you’ll always have latest information on Prader-Willi syndrome.
Get Information
Explore the Parents section of this website, especially the section for the age of your child. Call us with any questions or if you don’t find what you’re looking for. Join PWCF to stay informed about the newest information about treatments and statewide events and activities. Contact the national Prader-Willi Syndrome Association | USA to request their Package of Hope.
Connect with Other Parents
Because we know how helpful it can feel to speak with someone who really understands what you’reexperiencing, we can connect you with other parents to the extent you feel comfortable. We maintain a Parent Mentor Program and can connect you with a parent of a child of similar age or even in your city. We host quarterly Parent Sharing and Information Exchange Groups on Zoom, organized by the child’s age, that are open to all PWCF members. And as soon as we’re able we will host in-person share groups once again. Just let us know how you’d like to connect! We also encourage families to join one of PWSA | USA’s Facebook groups; just contact PWSA | USA directly at 800-926-4797 or info@pwsausa.org.
Learn About Growth Hormone
Growth hormone therapy (GHT) is now the standard of care for treating the symptoms of growth hormone deficiency in children caused by PWS. While GHT is not a cure for Prader-Willi syndrome, it is a treatment to reduce many of the syndrome’s physical symptoms and therefore may be the right journey for your child. Review the information on Growth Hormone Therapy under the Parents tab and elsewhere on this website.
Start Appropriate Therapies
Infants and children with Prader-Willi syndrome benefit significantly from various therapies including the “core therapies” which are occupational therapy, oral-motor therapy, physical therapy, oral motor therapy in infancy, and speech and language therapy as your baby ages. Other therapies, including infant stimulation therapy, vision therapy, and later, social skills therapy, may also be helpful. Services will vary depending upon your child’s unique needs.
Find an Endocrinologist
You are not alone
PWCF is here for you.
PWCF believes it is often from other parents where we can learn the most. Our Board of Directors, staff, and volunteers are primarily comprised of parents and family members of a loved one diagnosed with PWS. We’ve journeyed where you’re about to journey. We are here to support you every step of the way.