Approximately two years ago, several companies began clinical trials of drugs with the potential to treat hyperphagia and associated behaviors in Prader Willi syndrome (PWS). Outcomes of four of five trials are now available. Soleno Therapeutics recently announced the results of clinical trials of DCCR. In the double-blind study, caregivers were asked to rate the...
Category: Blog
Home Schooling: But I’m Not a Teacher, How Can I Teach My Children? (Part 2 In a Series)
Did you used to be a teacher? You must need special qualifications to home school, right? Variations of this question come up frequently when I tell people I home school. The truth though is that no, I was not a teacher, and though I do have a graduate degree, I don’t have any special training...
Surviving Quarantine as a Sibling
Siblings of individuals with Prader-Willi syndrome (PWS) are at an increased risk of developing emotional and mental health problems. According to the 2019 study on PWS sibling well-being, participants showed incredibly high rates of distress and lower than average resilience (Murphy, Thornton & Thornton, 2019.) The outbreak of COVID-19 and subsequent quarantine may make the...
Help! My kids are Schooling at Home and I don’t Know What to Do!
One of the biggest changes that the Covid-19 pandemic has brought is changes to the way our kids are educated. Most students spent all day at school, in a classroom, surrounded by other students, and with a teacher leading their learning. As schools around the country shut down, parents were forced into a variety of...
Surviving Teletherapy
If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions are...
Visceral Adipose Tissue Resides Within the Reference Range in Children with Prader-Willi syndrome Receiving Nutritional Intervention on a Regular Basis
In a recently published study from Japan, 20 children with Prader-Willi syndrome (PWS) were retrospectively evaluated for the effect of nutritional intervention (caloric restriction) and growth hormone (GH) treatment on visceral adipose tissue (VAT). VAT has been shown to be a marker for risk of metabolic complications and is believed to be a better marker...
Sunshine Means It’s Summertime!
Summer is the perfect opportunity to spend time with your family, have fun, and de-stress. Whether you are hiking near a remote waterfall, camping in your own backyard, riding bikes through the neighborhood, or running through the sprinkler, doing it as a family makes it more fun and helps create life-long memories. Individuals with Prader-Willi...
Exercise: Healthy Fun for Everyone
You have heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physical activity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and can...
Happy Teacher Appreciation Week!
It is National Teacher Appreciation Week and there is no better time to show the teachers in your life how valuable they are your children’s academic success and overall development! I once considered becoming a teacher (Who doesn’t; love the idea of getting out of work by 3 PM every day and long summer vacations?!)....
Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY!
Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY! Over 45 years ago, PWSA (USA) was founded by volunteers. It remained a fully volunteer-run organization until 1980 when our first paid Executive Director was hired (the next paid staff wasn’t hired until 1984!). While the number of staff has grown to 14, our...
At Home Resources for Families
Stuck inside your home and need things to do? We’ve put together a list of resources to help you out at home! ✅ Easy Peasy All-in-One Homeschooling – complete or partial free curriculum for all ages and stages https://allinonehomeschool.com/ ✅ Khan Academy – education for everyone, math, science, etc https://www.khanacademy.org/ ✅ Spelling City https://www.spellingcity.com/ ✅ Scripture Typer and Bible...
Important Information regarding COVID-19
PWSA (USA) is aware that the threat of illness is always a potential danger to those with PWS, their families and community. We advise our families to be extra vigilant in their efforts to prevent the spread of viral illness especially at this time when COVID-19 is likely to be present in their communities at...
National Nutrition Month
National Nutrition Month – March 2020 By: Stacy Ward, Director of Family/Medical Support & Special Projects March is National Nutrition Month. A month when the Academy of Nutrition and Dietetics encourages people to focus on making informed nutrition decisions, and good eating and physical activity habits. Parents and families of loved ones diagnosed with...
Meet Our Hope Hero: Lauren
She’s 39 now, my Lauren, and tonight is the big Night to Shine Dance (sponsored by the Tim Tebow Foundation). We’ve been doing all the things that girls do when you prepare for prom or a formal dance. Fittings, alterations, accessories, hair and make-up. She’s as excited about this as she was about the prom...
Sleep-Related Breathing Disorders in Young Adults With Prader-Willi Syndrome: A Placebo-Controlled, Crossover GH Trial
Sleep-related breathing disorders (SRBD) are common in people with Prader-Willi syndrome (PWS). Young adults with PWS benefit from GH continuation after attaining adult height by maintaining the improved body composition obtained during childhood. There are, no studies about the effects of GH on SRBD in young adults with PWS who were treated with GH during childhood. The objective...
Halloween Fun
Children, and many adults, look forward to Halloween with great anticipation…Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family…What could be more fun? But, what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities? The answer...
National Direct Support Professional Week
Direct support professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion,...
Recruitment: Acceptance and commitment training (ACT) for fathers of adolescents with PWS, a pilot study funded by the Foundation for Prader Willi Research
Fathers who have an adolescent with PWS age 13-18 are invited to participate in a 4-session, online, small group training exercise to reduce father’s perception of stress, improve parenting satisfaction and increase family involvement. Participants must reside at home with their adolescent and the adolescent’s mother, have a personal computer with a camera, microphone and internet...
The Safety and Efficacy of Growth Hormone (GH) Treatment in Infants with PWS; Findings from Current Research
by Mary S. Burr DNP, CPNP There is very little scientific evidence regarding the effects of early treatment with Growth Hormone (GH) in infants with PWS. Most of the information we have is anecdotal or reported case by case. The aim of this article is to review the evidence available regarding the effectiveness and safety...
A Comprehensive Overview of GI Issues in Prader-Willi Syndrome
Ann Scheimann, M.D., M.B.A. Dr. Scheimann is a Gastroenterologist and expert on PWS. Ann is a PWSA (USA) medical consultant on PWS Gastrointestinal (GI) issues. The prevalence of GI issues in persons with PWS of all ages is quite high. In addition to early feeding difficulties, reflux and aspiration symptoms are frequent problems in infancy. ...
Why You Should Hire Someone with Prader-Willi Syndrome
Persons with Prader-Willi syndrome (PWS) will work hard to earn your praise for a job well done. Given the correct environmental structure and supports, someone with PWS can be one of your hardest working and valued employees. When it comes to tasks like sorting, shredding, adhering stamps onto cards, repetitive responsibilities of this nature, and...
Summer Fun
Whether it’s 90 degrees and humid or 70 degrees and cloudy, summer is just around the corner. That means it’s time to prepare and plan your summer fun! For individuals with Prader-Willi syndrome, summer fun must include plans for heat precaution as they often have difficulty regulating body temperature and can overheat easily. Here are some...
Narcolepsy as a Characteristic of Prader-Willi Syndrome
Althea Shelton, MD and Jessica Duis, MD, MS Use of growth hormone requires a baseline sleep study prior to use and one at 8-10 weeks after initiation. Beyond this, when we see a child or adult in clinic who is having excessive daytime sleepiness and/or worsening behavioral concerns among other symptoms (e.g., headaches or bedwetting),...
Bringing Hope: A Mother’s Perspective
By Kristi Rickenbach, mother to Justice age 15 with PWS, board member, PWSA (USA) “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller There are things that happen in our lives that we have no control over- things we wish we could change....
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.