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PWSA Blog

Grandparent Perspectives

Many of our families are blessed to have grandparents in their lives. Some grandparents live close by and are able to help with the practicalities of raising someone with PWS, like doctor appointments, therpay visits, and babysitting or supervising so the main caergivers can have a break. Other parents live far away but find those...

Calling Alaska PWS Families

The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025.   Here’s how you can help: The Alaska Drug Utilization Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...

Calling Montana PWS Families

The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025.   Here’s how you can help: The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger)...

Calling Minnesota PWS Families

The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025.   Here’s how you can help: The Drug Formulary Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the...

Ask Nurse Lynn: Colon Cancer Screening, Why and How

Question: Female, 67 years old, Deletion subtype My sister with PWS (very high functioning) is scheduled for her first colonoscopy. It is just routine and there is no family history of colorectal cancer. Is this procedure absolutely necessary? Any additional advice or recommendations if the procedure is necessary. Nurse Lynn’s Response: Routine colon cancer screening...

The Importance of Caring for your Relationship

submitted anonymously No one tells you that the moment your child receives a life altering diagnosis your entire world shifts, including your marriage. Raising a child with a disability is beautiful, powerful, and deeply meaningful, but it’s also exhausting, emotional, and never ending. For many families, the stress and pressure don’t just challenge the child,...

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