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...
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),...
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....
Our precious grandson Joshua was born six weeks early on December 27, 2017. He weighed just 4 lbs. 6 oz. and was 16.5 in. long. Joshua’s mom, our daughter, Kelly, was hospitalized for premature labor, but when Joshy was born a month later something wasn’t right. He was floppy, had a very weak cry, didn’t...
I was 10 years old when my brother was born in the summer of 2003. This was an extremely exciting time for me as I was the youngest of my three other siblings and couldn’t wait to finally have a little sibling of my own to pick on. Admittedly, I was also a little jealous...
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 delayed...
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 combat...
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 activities....
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?” It...
Perseverating, or getting stuck on a topic or task, or repeating the same question or phrase over and over again, is common in Prader-Willi syndrome. Often, the repetitive behavior is provoked by anxiety as the repetition provides a level of comfort to an individual with PWS. Unfortunately, perseverating can be exhausting for parents and caregivers. Here...
My loved one with PWS is having a behavior outburst, tantrum or meltdown. What can I do? Being prepared and working with the individual with PWS to understand a triggering situation while helping them manage their anxiety can make difficult situation much easier to handle. Use a calm tone of voice. Yelling or...
Many individuals with Prader-Willi syndrome face emotional and behavioral challenges that present as outbursts. However, whether it’s caused by a change in routine or the presence (or absence) of food outbursts can be managed. For example, maintaining food security and adhering to a set schedule for snacks and meals will decrease food-related anxiety, and providing...
By Stacy Ward May is National PWS Awareness Month! PWS Awareness Month came to be thanks to the efforts of Amy Porter and Prader-Willi California Foundation members, Tom and Renay Compere, who brought the syndrome and the needs of the PWS community to the attention of Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman. The...
Not on social media? No problem! PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime. Day 1 May is Prader-Willi Syndrome Awareness Month! Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman co-sponsored the original House Resolution thanks to efforts by Amy Porter (Aunt to Colorado’s young...
By: Stacy Ward, Director of Family/Medical Support & Special Projects Parents and families of loved ones diagnosed with Prader-Willi syndrome have an array of concerns as their children move through life. By far one of their greatest struggles and worries is adequate nutrition and healthy living. PWSA (USA)’s Family and Medical Support counselors receive...
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Prader-Willi syndrome was first diagnosed in 1956; only 63 years ago. With supportive living and specialized care, we are now seeing individuals with PWS living longer and healthier lives. Susan Booth (Boothie) is one of those people. Susan was born March 18,...
By: Kim Tula, Family Support Counselor For many, Easter is a fun and joy-filled holiday, but for individuals with PWS and their families and caregivers, it can also be full of worry. The anticipation of large family dinners, Easter Egg hunts, and candy-filled baskets left by the Easter Bunny can result in increased anxiety and...
by Amanda Yanik The first and only person that mentioned Prader-Willi syndrome to us while our daughter Saoirse was in the NICU was the incomparable geneticist, Chin-To Fong, M.D.. I have a vague recollection of him coming in on a Friday night after the first week of our NICU stay. He mentioned a previous patient of...
Quality sleep is vital to our physical and mental health, as well as our emotional wellbeing. Yet, many of us struggle to get a good night sleep on a regular basis. Now, imagine if you were rarely able to get a good night’s rest and the impact that accumulated “sleep deficit” would eventually have on...
by Lisa Graziano, MA., LMFT Based on the original article by Katherine Crawford, Former PWCF Family Support Coordinator Whatever holiday you and your family celebrate, PWSA (USA) wants to help you make it both fun and safe. The key is to plan well ahead of time and strategically, incorporating the strategies outlined in this...
By: Cindy Szapacs, M.Ed. BCBA In the first entry for this series, a description of applied behavior analysis (ABA) was presented. It was discussed that ABA is a set of principles, not a specific intervention, that can be used to teach people of all ages and abilities to acquire socially significant behaviors using research-based...
Held October 4 – 6, 2018 in Las Vegas Nevada, the Foundation for Prader-Willi Research Annual Research Symposium and Conference started with the Research Symposium during which numerous abstracts and preliminary results were presented from the podium. Most evidence was findings from pre-clinical phase research and phase 2 trials. All evidence was very promising and many trials are...
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...
On September 8, 2018, PWSA (USA) help a parent mentor workshop at the Monroe Carrell, Jr. Children’s Hospital at Vanderbilt University in Nashville, Tennessee. PWSA (USA) Parent Mentor Director, Diane Seeley, created the innovative workshop to educate parent mentors about a variety of topics, including current trends in dietary management, advantages and safety of various...
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.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
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.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
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.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
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.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
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.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
