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...
PWSA (USA) welcomes its first official Corporate Partner; Prader-Willi Homes of Oconomowoc, at the PWSA (USA) Board of Directors meeting on September 14th. A premier residential facility located in Dousman, Wisconsin, Prader-Willi Homes of Oconomowoc has been supporting individuals with PWS and their families for over 35 years. PWSA (USA) works with Corporate Partners to...
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...
By: Cindy Szapacs, M.Ed. BCBA Before getting into the nuts and bolts of this article, I would like to introduce myself and explain why I am writing this series of articles. I am a mother of two boys, one of whom has Prader-Willi Syndrome. I also am a Board Certified Behavior Analyst. I currently work...
by Abigail Ogilbee Have you ever worn a great pair of sunglasses in the summer? The lake isn’t as blinding when the sun hits the waves, the trees are a little greener, and the world is a little more crisp. Take them off and the sun burns your eyes making you squint with pain. Elsa...
Kate Beaver, MSW, CSW-Family Support Counselor Because her daughter has Prader-Willi syndrome, Kate had first-hand knowledge of the challenges families encounter with the syndrome and had valuable personal experience in how to access services and support for her family prior to joining the PWSA (USA) staff. As a Crisis Intervention and Family Support Counselor, Kate’s...
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...
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...
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...
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...
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...
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...
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...
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...
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,...
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!...
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...
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...
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...
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...
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...
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...
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...
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)โs 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)โs Family Support Counselors, and then works closely with parents and schools to review education records, assess the childโs situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans.ย 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 variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 monographย The Legal Meaning of Specific Learning Disability; the more recently published books,ย Aย Digest of Supreme Courtย Decisions Affectingย Educationย andย Student Teaching and the Law; and the two-volume referenceย Section 504, the ADA and theSchools, now in its fourth edition. ย In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERAโs Division A (Administration, Organization & Leadership).ย In 2013, he received the University Council for Educational Administrationโs Edwin Bridges award for significant contributions to the preparation and development ofย school leaders.ย In 2016, he received the Education Law Associationโs Steven S. Goldberg Award for Distinguishedย Scholarship in Education Law, and in 2017 he received the Council for Exceptional Childrenโs Special Education Research Award.ย Note:Perryโs 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Schoolโs 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)โs Special Education Advisory Board.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.ย 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. ย 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.ย 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 (Louisianaโs 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: ย Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities โ A Resource Manual (2014);ย Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Lawsย (2006), coโauthored 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, includingย Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Educationย andย Mattie T. v. Mississippi Department of Education.ย The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEAโs 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 Schoolโs week long Institute on Special Education Advocacy.
