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...
Earlier this year, Pfizer Pharmaceuticals experienced a temporary interruption in the supply of the Genotropin 5 and 12mg cartridges, as well as all Mini Quick devices. According to the Commercial Brand Lead for the US, Michael Harris of Pfizer Pharmaceuticals, the interruption was due to a manufacturing issue in fall of 2019 at the...
Though the study did not meet statistical significance for Primary Endpoint, significant improvements were seen in a prespecified subgroup with severe hyperphagia. Significant positive changes were also seen in two of three key secondary endpoints. Interim analysis of Ongoing Extension Study (C602) showed further reductions in hyperphagia of 48% after six months of DCCR...
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...
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...
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...
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...
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...
Not on social media? No problem! PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime. Day 20 Hypogonadism (a condition in which the testicles are not working the way they should) and cryptorchidism (undescended testes) are both common newborn males with PWS and can lead to...
You’ve 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, physicalactivity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and can even...
So far, we have looked at some of the many reasons negative behaviors occur, as well as behavior management techniques helpful with individual with Prader-Willi syndrome. Positive Behavioral Supportis another essential tool for caregivers. Positive behavioral support can help decrease tantrums, reduce perseverative and OCD like behaviors, and increase cooperation and effective transitions through...
Individuals with Prader-Willi syndrome often demonstrate oppositional behavior, another challenge for parents and caregivers. Tips for managing oppositional behavior include: Avoid yes and no questions. Instead, offer limited choices. Rather than asking, “Do you want to wear your red coat,” try offering two choices: “Do you want to wear your red or blue coat?”...
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.