One of the most difficult challenges parents face is managing their child’s behavior. Whether it occurs at home, at school, or in a residential care setting, problematic behavior is one of the most frequent reasons parents and providers call PWSA (USA) for help. The first step to effectively manage behavior is to identify the problematic...
Grandparents: Make Philanthropy a Family Affair
Helping Your Grandchildren “Experience” Philanthropy How often do you hear that today’s generation of children are self-absorbed or one of entitlement? That’s a pretty harsh statement to make, and one that I don’t entirely agree with. I think kids today don’t just want things – they want experiences too! Children see the needs of the...
Recording of Recent Webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now Available
The recent webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now available. This webinar provides important information about PWS clinical trials including: what to expect when participating in a clinical trial, what questions you should ask, and how to get the information you need to decide if...
LivingHealthy with Prader-Willi Syndrome : Cookbook and Nutrition Tips
To purchase this item, click here Latham Centers recently published its first cookbook entitled LivingHealthy with Prader-Willi Syndrome: Cookbook and Nutrition Tips. Written for the Prader-Willi syndrome community, the cookbook is a complete resource for planning nutritious, delicious meals for individuals with PWS— and for tips and advice from experts in the field. The menu...
A Mother’s Day Gift
By Lori Moline After a long, harsh Minnesota winter, the sounds of birds, and the sight of greenery and flowers are like a transfusion of hope- That’s why one of our family’s favorite activities is the annual trek to the local greenhouse and plant store. This year, with everyone else busy with other things, Sophie...
Advocating for your child in the ER
A Mother’s Experience By Katie Moureau My son Cade is three years old; and has been on oxygen since he was 4 months old. This year started out with a bang! One early winter morning, Cade’s pulse ox started beeping. By 5am it was alarming frequently as he was unable to maintain his oxygen levels...
Summary Of Active Clinical Trials For Prader-Willi Syndrome Hyperphagia
Research is one of PWSA (USA)’s Five Pillars of Support and also a vital component to the treatment of Prader-Willi syndrome. Thanks to the work of a dedicated PWSA (USA) board member, we can share with you a compiled list of upcoming PWS drug trials. Summary of Active Clinical Trials for Prader-Willi Syndrome Hyperphagia It...
Family Thriving Despite Daughter’s Rare Chromosomal Disorder
GRAND FORKS, N.D. — As soon as those two lines appear on a pregnancy test, thoughts start pouring in: what will my child’s life be like? Will it be a boy or girl? Will they grow up to be an astronaut? Find the cure for cancer? What will it be like being new parents? Steph...
Convention Connections: One Mother Shares How the PWSA (USA) Convention Helped Her and Her Family
A few days ago, I was chatting with a fellow special needs mama when she mentioned that there was a conference on the other side of the country for the condition her daughter has, but she wasn’t sure if she should go. It took everything in me to not tell, “WHAT?! ARE YOU NUTS?!” Instead,...
Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs
The holidays are almost upon us! For a lot of us, that means spending extra time with extended family. In my case, my three siblings, their families and my family are all converging upon my parents’ house in Colorado. This should be a point of excitement and joy. And, for the most part, it is!...
He’s Still Henry- Our Prader-Willi Syndrome Story
One night last week, I had a moment where, for the first time in his 18 months of life, I thought, “I wish Henry didn’t have to have Prader-Willi Syndrome.” It was a guilty thought, and was accompanied by more than a few tears. I’m not sure if they were tired tears, third-trimester tears or...
Diagnoses and characteristics of autism spectrum disorders in children with Prader-Willi syndrome
Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism. The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy...
Who’s Harder To Raise Boys or Girls?
By Diane Seely, New Parent Support Coordinator Snips and snails and puppy dog tails… sugar and spice and everything nice… Parenting is hard work. It’s heart wrenching, overwhelming and joyful all at once. Lately I’ve been pondering whether raising a son with Prader-Willi Syndrome is more difficult than raising a daughter with PWS? The frustration...
Grandparents of Prader-Willi Syndrome Children
I came to be the grandmother of a child with Prader-Willi Syndrome through marriage, and little did I know at the time what a special grandson Reagan was going to be. When I look at him, I do not see a child with PWS, but rather I see Reagan, a very special young man. I...
TOO DARN HOT!
by Kathy Clark, Medical Coordinator Body temperature regulation is a challenge for people with PWS. They can easily become overheated, especially during infancy and childhood. Here are some great ideas to help you be safe when the thermometer rises. Outdoor activities should be planned for the cooler mornings, rather than sunny afternoons or the heat...
Grayson’s Story
When Grayson was born, I remember being shocked that he had a headful of tiny, dark ringlets of hair. I wasn’t the only one; His nurses and visiting family and friends always made such a fuss over his curls. They were unexpected. And beautiful. Weeks later, after an extended stay in the NICU and...
The Study of Pain in Adults with PWS
I would like to invite you to fill out a questionnaire for the study of pain in adults with Prader-Willi syndrome. This study of the VU University (Amsterdam) is conducted in the Netherlands, but the questionnaire is also distributed in Flanders and America. The purpose of the questionnaire is to gather experiences and knowledge about...
Special Announcement: Oxytocin Phase 2 Study Grant Funded
PWSA (USA) would like to thank all of the generous donors who contributed to the Association towards oxytocin research. You have made this – and future clinical trials on oxytocin possible. Phase 2 Study: Intranasal Oxytocin for Treatment of Infants with Prader-Willi Syndrome in Nutritional Phase 1a Principal Investigator: Jennifer Miller, MD Pediatric Endocrinology, University...
Two Research Studies Looking for Participants
Hello from the PRETEND/Telehealth team at Case Western Reserve University! We are excited to say that we are gearing up for another enrollment trip for our ongoing studies on Prader-Willi syndrome, this time in San Antonio, TX. We will be there from Wednesday March 8 through Saturday March 11.We are recruiting families with children with PWS 3-11 years...
PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS
The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In...
PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS
Profiling of the gut microbiome in children with PWS Principal Investigator – Andrea M Haqq, MD, MHS, FRCP University of Alberta, Canada ABSTRACT Individuals with a genetic condition called Prader-Willi Syndrome (PWS) are at risk for development of obesity at a young age. Children with PWS often have a very high food intake because...
The Night we told Ryan he has Prader-Willi Syndrome
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....