When is it the right time? At what age? At what cognitive level? Will he even understand? Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over? Or will it bring relief—as in “oh, now I understand why I talk about...
Important Medical Growth Charts
PWSA (USA) Growth Charts Now Available! A child’s growth is the single best indicator of their health – important data for every pediatric appointment. For children with Prader-Willi Syndrome, the pattern is not typical, and interpreting each height and weight can create questions and worries for parents and professionals. With the support of PWSA (USA)...
PWSA (USA) Approves Grant
We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies....
Warning – Medication combinations may fatally impair breathing in PWS!
We want to remind parents that impaired breathing is a leading cause of death in people with PWS. After the recent unexpected death at home of a young person with PWS, we want to alert parents and professionals to the potential risk factors with combinations of medications, especially after surgery. PWSA (USA) continues to collect...
Please Participate in Research on PWS Caregiver Stress
I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS. The survey will...
A PWS Family’s Story
For 19 years, the Angel Drive had provided critical funding to help thousands of PWS families. Please see one family’s story below. We are “Saving and Transforming Lives”. Hi! I would like to introduce you to my crazy beautiful family. Moises (daddy) Breanna (myself/aka mommy) Madison (10.5 yrs.) Noah (6.5 yrs. diagnosed with cerebral palsy)...
Exciting News on Carbetocin for PWS!
Sara Cotter, mom to a child with Prader-Willi syndrome (PWS), has formed a company dedicated to advancing treatments for PWS and related disorders. The company is called Levo Therapeutics (www.levotheraputics.com). Sara has years of experience in the pharmaceutical industry, most recently as an analyst with UBS. She recently left her job to pursue the leadership...
A Dad’s Love
I’m not much of a Facebook person, in fact other than a few pictures over the years I’m pretty sure I’ve never actually written anything. I’m not much of a writer either. The last time I wrote this much I was probably back in college and that was double spaced in 14.5 font in order...
Two New Research Studies
If you live in the Indianapolis area and have a child with PWS between the ages of 3 and 11 years old, you may be eligible for one of these very interesting studies on remote education for PWS. Please read the two attached documents. The PRETEND (Parent-focused Remote Education to Enhance Development) – Research...
PWSA (USA)’s Webinar Series Continues: Overview of the New Publication “Transition Planning Resource Guide”
Thursday | October 13, 2016 | 7:30 p.m. – 9:00 p.m., EST. Planning and preparing for transition in the school setting to adult services and programs can be an overwhelming process not only for the person with PWS, but also their families. Barb Dorn, RN, and Kate Beaver, MSW, will share an overview of...
“Kicking The Can” with PWS
Written by: Sara Grosso For the last few months I’ve focused on modeling an active lifestyle and healthy eating choices for Grayson. Running is beginning to become a habitual part of my daily routine. The length and route of each run depend entirely on what kind of “adventure” takes place between the hours of 5:00...
The Confusing World of Growth Hormone Insurance Coverage and Denials
The Confusing World of Growth Hormone Insurance Coverage and Denials – Kathy Clark, PNP, PWSA (USA) Coordinator of Medical Affairs It may feel like insurance companies are the enemy when they deny a medication that we feel is so important to our children. There are some complex explanations that I will list here that...
Weathering the Storm – A Mother’s Story
Written by: Sara Grosso My name is Sara Grosso. I am the mother of Grayson Grosso, who was diagnosed with Prader-Willi syndrome at just one month after birth. He is a thriving two-and-a-half-year-old boy now and it has taken me nearly his entire life to put his story into writing, because, frankly, it makes me...
13 Year Old with PWS Will Be On a Popular TV Show!
We have exciting news for you all! On Monday, June 27th, Jack Lindsey who is 13 years old and has PWS will be on a popular TV show on the sportsman channel at 6pm CST. The opening episode features Jack hunting and killing a buck with his bow. The air times are as followed: Mon....
Update: Oxytocin Phase 2 Trial
It has been nearly one year since we learned of the initial potential of oxytocin and PWSA (USA) began raising funds for the phase 2 clinical trial. This trial will provide us a greater understanding of the potential benefits, appropriate dosage needed, and additional vital information. The phase 1 study results were very positive and...
New Webinar DVD and Publication
Must-Have’s For Every PWS Family! Below are two wonderful resources PWSA (USA) is offering to our amazing community. Learn more about them below. Essential Early Childhood Behavior Management Strategies Three weeks ago, Lisa Graziano, MA, LMFT, presented a webinar entitled, Essential Early Childhood Behavior Management Strategies. Parents found it very helpful in understanding behavior...
Telehealth Intervention Research-Case Western Reserve University
We are currently recruiting children between the ages of 3 and 11 with PWS and their caregivers for two intervention studies. These play-based interventions are delivered via telehealth (webcam chatting). Our research team will be in the NYC area (Queens) on May 15-16 to enroll families. Study information can be found in the attached fliers....
Book Now Available through PWSA (USA)
Prader-Willi Syndrome : How Parents and Professionals Struggled and Coped and Made Genetic History By: John Hernandez-Storr Now available through PWSA (USA) — this amazing 256 page book gives never-before-told historical facts on the evolution of the medical world working to understand Prader-Willi syndrome (PWS) entwined with intimate, personal stories of the original PWSA (USA) pioneers....
PWSA (USA) Webinar: Essential Early Childhood Behavior Management Strategies: Good Foundations Now, Good Behaviors Tomorrow
All children do best with consistent routines and structure provided in a calm and loving environment. These ingredients are absolutely essential, however, for infants and children with PWS. This presentation will show you how to create the necessary foundations your baby or young child with PWS needs in order to increase their overall sense of...
Telling the Story of Students with PWS School Data = Understanding
In March 2016, PWSA (USA) launched a groundbreaking new survey to capture, for the first time ever, the school experience of students with PWS across the United States. This survey is for parents/guardians of children with PWS currently in school and those who graduated in the past. The School Experience Survey will help us gather...
A Massive PWS Awareness Campaign for Geneticists
PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge...
Special Webinar: Learn How You Can Help Transform the Lives of Those with Prader-Willi Syndrome!
Join us on Tuesday, March 22nd, 2016 1:00PM – 2:00PM EDT Learn about how PWSA (USA)’s services are helping families and loved ones and how YOU can help PWSA (USA) Save and Transform Lives with an eWalk or On The Move event! Featuring: Evan Farrar, Crisis Intervention and Family Support Counselor Bonnie Shelley, Coordinator of...
Research Announcement: Report on the Zafgen Meetings
Due to the results of the phase 3 clinical trial on the Zafgen drug beloranib, a meeting was recently held in Miami to review the data and meet with thrombosis experts. This was followed up by a meeting with PWS caregivers, many of whom had children on the clinical trial. As reported in the webinar...