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Category: Blog

Ask Nurse Lynn: Fevers with PWS

Question: Female, 2 years old, unknown subtype My daughter has had a very high fever for the last two days. There are lots of viral things going around here so I am thinking that it is that. Is it normal that kids with PWS get fevers? I have read before that usually they don’t break...

VYKAT XR Town Hall Summary

On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for caregivers and guardians to hear more about people’s lived experiences with VYKAT XR. Experiences were shared from individuals who participated in the Phase 3 clinical trial of VYKAT XR, and attendees were able to ask questions of each other....

photo collage of kids with Prader-Willi syndrome

Occupational Therapy, Parent Perspective

We asked some of our parents on staff to share their experiences with occupational therapy since April is National Occupational Therapy Month! Occupational therapy (OT) is a standard of care for individuals with Prader-Willi syndrome. If your loved one does not yet receive OT, please reach out to their doctor or school to learn how...

Zahra’s Night of Light Shines Bright!

What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY. The evening brought together family and friends for a beautiful celebration benefiting children like Zahra who are living with Prader-Willi syndrome. Guests enjoyed live entertainment, delicious...

photo of an occupational therapist helping a child with prader-willi syndrome (PWS) work on fine motor skills

Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life

Contributed by Kristi Larsen, MS, OTR/L, Occupational Therapist, Oakwood Village Rehab Services  April is National Occupational Therapy (OT) Month, a time to recognize the vital role occupational therapists and occupational therapy can play in helping people of all ages develop skills, confidence, and autonomy in daily life.  Kristi Larsen, MS, OTR/L, is a licensed and...

photos of moms with their kids with Prader-Willi syndrome or PWS

Post a Message for Mother’s Day

*In the interest of space, please note that when we use the term “mother”, we not only refer to biological or adoptive mothers, but also those female figures who are an outstanding, constant, and loving presence in your loved one’s life. Mothers are incredible! Often the life-force of the family; the caretaker, nurturer, nurse, teacher,...

Ask Nurse Lynn: Skin Picking Strategies

Question: Female, 42 years old, Deletion My daughter is a severe picker, wondering if you have any advice that would help? Nurse Lynn’s Response: Skin picking is a common and challenging behavior in individuals with PWS. Here are some strategies that might help a sample sensory plan is also included. Environmental & Behavioral Strategies 1....

A Loving School is Vital

contributed by Louis Schutz, father to Laura (38, living with PWS) What steps did you take to prepare for her life as an adult? In her teens, the rough behaviors became extreme. She was failing on many levels, even with doing everything we could. Placement felt like an option. Luckily an opening became available at...

Graphic of Nurse Lynn with the headline Food Seeking Behaviors in relation to Prader-Willi syndrome (PWS)

Ask Nurse Lynn: Food-Seeking Behaviors

Question: Female, 23 years old, UPD subtype My 23-year-old daughter with UPD is just now developing some food-foraging behaviors. I am assuming this is not uncommon, but I am just wondering if this is typical to start at this age. We have never locked our cabinets because we never had to, so I am wondering...

Free Live Webinar: Understanding VYKAT XR – The First FDA-Approved Treatment for Hyperphagia in PWS

Date: Wednesday, April 16, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM The Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families, caregivers, and healthcare providers understand what...

IVF Miracle

submitted by Melissa Karzazi, mom to Samir So… let me tell you about my little IVF miracle. The diagnosis of being infertile seemed so final. We tried to get pregnant for 5 years before turning to IVF. We chose not to do genetic testing prior to implantation because, at 35 years old, in the IVF...

PWS Breaking News! FDA Approves First-Ever Treatment for Hyperphagia in PWS

We are thrilled to share with you this BREAKING NEWS for the PWS Community! The U.S. Food and Drug Administration (FDA) has officially approved VYKAT™ XR (diazoxide choline extended-release tablets, formerly referred to as DCCR) as the first-ever treatment for hyperphagia in Prader-Willi syndrome. This is a monumental victory for individuals with PWS, our families, and the entire rare disease...

Graphic with Nuse Lynn to promote article about Growth Hormone Levels in individuals with Prader-Willi Syndrome (PWS)

Ask Nurse Lynn: Growth Hormone Levels

Question: Male, 4 years old, unknown subtype What if the growth hormone levels are high? Does my son still need to be on growth hormone? Nurse Lynn’s Response: Growth hormone therapy is a cornerstone of treatment for individuals with PWS. It helps promote growth, improve body composition, enhance muscle tone, and support overall metabolic and...

Women in PWS: Moving Forward Together

March is Women’s History Month and the 2025 theme is “Moving Forward Together: Women Educating and Inspiring Generations.” There are many incredible women in the PWS community who have educated families, schools and residential facilities, and professionals, inspired generations, and ultimately have improved the quality of life for our loved ones living with PWS. We...

view of Arizona desert with the headline about staying cool at the upcoming Prader-Willi syndrome (PWS) conference

Staying Cool at Conference

Beat the Heat in Arizona! As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with so many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and collectively sharing information, guidance, support, great conversations, maybe some...

Ask Nurse Lynn: Respiratory Infections

Question: Male, 7 months old, unknown subtype He has a cough, congestion, and I have the humidifier with Vicks vaporizer going and been using the nose sucker by Frida to help clear his airway. But I’m so worried at night especially knowing now he has sleep apnea. He’s having a hard time breathing. I really...

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