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...
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...
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)...
We want to remind parents that impaired breathing is a leading cause of death in people with PWS. After the recent unexpected death at home of a young person with PWS, we want to alert parents and professionals to the potential risk factors with combinations of medications, especially after surgery. PWSA (USA) continues to collect...
For 19 years, the Angel Drive had provided critical funding to help thousands of PWS families. Please see one family’s story below. We are “Saving and Transforming Lives”. Hi! I would like to introduce you to my crazy beautiful family. Moises (daddy) Breanna (myself/aka mommy) Madison (10.5 yrs.) Noah (6.5 yrs. diagnosed with cerebral palsy)...
I’m not much of a Facebook person, in fact other than a few pictures over the years I’m pretty sure I’ve never actually written anything. I’m not much of a writer either. The last time I wrote this much I was probably back in college and that was double spaced in 14.5 font in order...
Thursday | October 13, 2016 | 7:30 p.m. – 9:00 p.m., EST. Planning and preparing for transition in the school setting to adult services and programs can be an overwhelming process not only for the person with PWS, but also their families. Barb Dorn, RN, and Kate Beaver, MSW, will share an overview of...
Written by: Sara Grosso For the last few months I’ve focused on modeling an active lifestyle and healthy eating choices for Grayson. Running is beginning to become a habitual part of my daily routine. The length and route of each run depend entirely on what kind of “adventure” takes place between the hours of 5:00...
The Confusing World of Growth Hormone Insurance Coverage and Denials – Kathy Clark, PNP, PWSA (USA) Coordinator of Medical Affairs It may feel like insurance companies are the enemy when they deny a medication that we feel is so important to our children. There are some complex explanations that I will list here that...
Written by: Sara Grosso My name is Sara Grosso. I am the mother of Grayson Grosso, who was diagnosed with Prader-Willi syndrome at just one month after birth. He is a thriving two-and-a-half-year-old boy now and it has taken me nearly his entire life to put his story into writing, because, frankly, it makes me...
We are currently recruiting children between the ages of 3 and 11 with PWS and their caregivers for two intervention studies. These play-based interventions are delivered via telehealth (webcam chatting). Our research team will be in the NYC area (Queens) on May 15-16 to enroll families. Study information can be found in the attached fliers....
All children do best with consistent routines and structure provided in a calm and loving environment. These ingredients are absolutely essential, however, for infants and children with PWS. This presentation will show you how to create the necessary foundations your baby or young child with PWS needs in order to increase their overall sense of...
In March 2016, PWSA (USA) launched a groundbreaking new survey to capture, for the first time ever, the school experience of students with PWS across the United States. This survey is for parents/guardians of children with PWS currently in school and those who graduated in the past. The School Experience Survey will help us gather...
Join us on Tuesday, March 22nd, 2016 1:00PM – 2:00PM EDT Learn about how PWSA (USA)’s services are helping families and loved ones and how YOU can help PWSA (USA) Save and Transform Lives with an eWalk or On The Move event! Featuring: Evan Farrar, Crisis Intervention and Family Support Counselor Bonnie Shelley, Coordinator of...
Prader-Willi Syndrome: Adulthood 101 With a presentation by Elizabeth Roof, M.A., on Monday, February 22, 2016, at 7:30 p.m., EST. If you were unable to attend the 2015 conference, or missed this presentation while there, you will be glad to hear it now. In Prader Willi Syndrome: Adulthood 101, Ms. Roof will present on supports...
Dear Friends, The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all. If you will be with relatives, carefully plan ahead of time and communicate the importance of food...
Janalee Heinemann, PWSA (USA) Coordinator of Research and International Affairs Noninvasive prenatal screening (NIPS) – also called noninvasive prenatal testing (NIPT) or cell–free DNA testing – is now available for Prader-Willi syndrome (PWS). Testing can be done any time after 9-10 weeks gestation because DNA from the fetus circulates in maternal blood. The testing is...
PWSA (USA) is sponsoring a grant that will bring therapy to the home! PWSA (USA) Joseph McErlane Research Grant Project Title: Evaluating the Feasibility of a Telehealth Intervention of Early Social Cognitive Processes in Children with Prader-Willi syndrome Principal Investigator: Anastasia Dimitropoulos, Associate Professor of Psychology, Ph.D. Case Western Reserve University, Cleveland, OH ...
Dr. Jennifer Miller’s webinar on the Phase 2 Oxytocin study recording is available. Click here to view the recording.
One of our goals for 2015 is to focus on ways to have more impact with ER situations. We all know that taking a child or an adult with Prader-Willi syndrome to the ER can in and of itself be life-threatening. I certainly know this through my experience of covering most medical crises for over...
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.
