Transcript from an interview by Carrie Larsen, Director of Marketing and Communications for PWSA | USA with Leora Saacks, adult sibling to Andrea (living with PWS). Interview log: I’m Leora, I’m Andrea Saacks’ younger sister. Andrea is 2 years older than me; she has Prader-Willi syndrome, and we live in Philadelphia. I live about half...
Harmony Biosciences Initiates TEMPO PWS Study
Harmony Biosciences Holdings, Inc. is seeking participants for its TEMPO study, a global Phase 3 trial investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) in individuals aged six years and older with Prader-Willi syndrome (PWS). Pitolisant is a medication that could help manage sleepiness and behavioral issues in people with PWS. There...
Ask Nurse Lynn: Temperature Abnormalities
Question: Female, 5, Deletion: What temps would you write in an IEP for kids to stay indoors? Example below 40 and higher than 80? What wording would you recommend? Nurse Lynn’s Response: The degree and severity of temperature abnormalities can vary from person to person. In short, I wouldn’t write down exact temperatures. I would use...
Cruising with Grace
Contributed by Carrie Bell PWS Travel Tale When we first got Grace’s diagnosis, I remember thinking, “Well, I guess we’ll never be able to travel again. And we’ll DEFINITELY never cruise again.” Because let’s face it, cruises are synonymous with food. How wrong I was! Last month our family of nine flew from Kansas City...
Spotlight on Advocacy: Own Your Story
Contributed by Denise Servais I recently had the opportunity to attend a luncheon hosted by Chad Greenway’s Lead The Way Foundation. Chad Greenway, a former Vikings football player, along with his wife Jenni and many Twin Cities leaders associated with the foundation, were among the 120 attendees. The foundation’s purpose is to support families with...
Scholarship for Adults with Rare Diseases
This year, the #RAREis Scholarship Fund, in partnership with the EveryLife Foundation for Rare Diseases, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org. The program was established in 2020 to enrich the lives of adults living with rare diseases by providing...
How Family Support Can Help Your Family
The first couple days, months, and years into a PWS diagnosis can be scary and overwhelming. Navigating a PWS diagnosis can come with a lot of fast and unpredictable changes. Our Family Support team is always here to offer HELP & HOPE. From your first days in the NICU to settling into life at home,...
Ask Nurse Lynn: Mentsruation and Hormone Support
Question Female, 15, Deletion: Do you happen to know of any standard of care as far as hormone support or instigating a menstrual cycle in females with PWS? Is there any harm in waiting to initiate a cycle? I know a lot of women and girls with PWS never start their period without medical intervention,...
Neurodiversity and Prader-Willi Syndrome
Neurodiversity, a term coined by Australian sociologist Judy Singer in the mid-1990s, is a social justice movement that seeks to bring awareness, equality, and inclusion to people of various neurological abilities. According to Harvard Medical School, “The word neurodiversity refers to the diversity of all people, but it is often used in the context of...
Ask Nurse Lynn: Weight Loss Medications
Question: Male, 33, Deletion How much promise would a weekly injection of Ozempic or Trulicity have on my son for weight loss? Nurse Lynn’s Response: Thank you for your question. From the limited research on the PWS population and the use of GLP-1 medications, they do show some success in glycemic control but do not...
Interactive Map for PWS Families in the Pacific Northwest
Contributed by Vonnie Sheadel Washington and Oregon Chapters Creating Interactive Map for PWS Families PWSA of Oregon and Washington are in the process of developing a Google map for PWS families to find each other in the Pacific Northwest. It will be a safe, secure and easy way for families to locate others in their area....
Tips for First Time Sleep Studies
Contributed by Jennifer Andrews A diagnosis of PWS requires families to learn all sorts of new things, among them medical procedures we may not be familiar with. A fairly common one, the sleep study, can be a little daunting when you don’t know what to expect. Prader Willi Syndrome can manifest with a variety of...
Ask Nurse Lynn: Excessive Daytime Sleepiness in School
Question: Any tips or tricks to help when our little ones get tired throughout the school day, besides a nap? Not all schools will allow for a student to take a nap during the regular school day. Nurse Lynn’s Response: Hello, and thank you for your question. So many of our children display excessive daytime...
Donor Spotlight: Your Journey Team (powered by AMR Real Estate Indianapolis)
Contributed by Niki Fuller Allow me to take a moment to share a personal journey that has profoundly impacted our lives. In 2012, I founded Your Journey Team with a vision to assist individuals in their most safest place and financial investment—their home. Serving Indianapolis and its neighboring communities, we’ve been dedicated to guiding our...
How To Travel with Refrigerated Medication
Contributed by Anne Fricke There was a time when we thought the refrigeration needs of Freya’s growth hormone alone would hinder our travel and keep us home more than we desired. We love our home and enjoy being here, but traveling is an important aspect of life for my family. We have had to make some...
2025 International PWS Conference Announcement!
PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort & Spa in Phoenix, Arizona! The conference theme, “United in Hope”...
Ask Nurse Lynn: Anxiety and SSRIs
Question: Female, 18, deletion, Arkansas: She has diabetes, one kidney does 25%, now even more increased anxiety. The first time we are trying anything for anxiety. The Dr is giving her Lexapro- the generic. Is there a certain one recommended? Also, is there a buildup or psychosis danger? Nurse Lynn’s Response: Thank you for your...
New PWS Clinical Study: Free Informational Webinar with Harmony Biosciences
Join PWSA | USA and the team from Harmony Biosciences on Tuesday, March 12th at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the upcoming Phase 3 registrational TEMPO study, a randomized, double-blind, placebo-controlled, multicenter, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS,...
Nutrition in the PWS Family
Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about...
Ask Nurse Lynn: Birth Control and Hypogonadism
Question: Female, 34, UPD.Is there some age at which it will be appropriate for our daughter to stop taking female hormones (in the form of birth control pills)? Nurse Lynn’s Response: Thank you for your question. The issue of Hormone Replacement Therapy (HRT) is more complicated than one would think. Please make sure to discuss...
Spotlight on Hope: Mira and the Bee
contributed by Kristin McKinney My daughter, Mira, is 12 years old and in our local middle school in Colorado. She got a perfect score on a written spelling bee test at her school that allowed her to qualify to participate at the district level. She was only 1 out of 3 students in the whole...
PWS Mom, Staff Member Melanie McDonald Spreads Awareness Through Local Library Donation
For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather...
Ripple Effect: Advocacy in the PWS Community
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” —The Lorax, Dr. Seuss Contributed by Jennifer Andrews, Advocate and Mom to Josephine A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw...
Pitolisant Receives Orphan Drug Designation
Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS. ...