To close out a memorable and historic PWS Awareness Month, PWSA | USA is partnering with Kendra Scott for one final awareness celebration! The jewelry company will host a PWS Awareness Month Giveback event on Saturday, May 27, 2023, from 12:00 - 2:00 p.m. EST to support PWSA | USA's advocacy, family support, and research...
The month of May is recognized as Better Speech and Hearing Month to bring awareness to the many speech, language, swallowing and hearing disorders among children and adults. Individuals with PWS often present with a variety of clinical features that may impact their speech and language development (Lewis, 2023) including reduced articulation, hypernasality or hypo...
We are excited to share the upcoming Hope United fundraiser in New Mexico, benefitting PWSA | USA, AXES FOR HOPE! This great event is hosted by PWS parents and PWSA | USA parent mentors Jonathan and Maggie Andrews in New Mexico. Event Details When: Sunday, May 28, 2023 from 12:00 – 5:00 p.m. Where: ABQ Ax...
Today, May 15th, our PWS community has something new to celebrate! PWSA | USA is excited to announce U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL) have filed a joint resolution declaring May 15, 2023, and every May 15th thereafter, Prader-Willi Syndrome (PWS) Awareness Day in the United States of America!...
PWSA | USA received information from Harmony Biosciences that the company will share new safety and efficacy data for its drug WAKIX (Pitolisant) at the "SLEEP 2023" Annual Meeting, June 3-7, 2023 in Indianapolis, IN. WAKIX is an FDA approved drug used to treat excessive daytime sleepiness or cataplexy in adult patients with narcolepsy. Below,...
Contributed by Dorothea Lantz One great way to help raise awareness for PWS during the month of May is to request a proclamation or resolution from your local and/or state government. A proclamation is an official designation of an event. Proclamations are created to help educate the public about a certain topic, in this case...
PWSA | USA is excited to announce the launch of our new Healthcare Provider Project ECHO Series on May 16, 2023, at 5:00 p.m. CST. We are proud to offer this opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO®...
Kenneth (Ken) Smith, 62, of Sarasota, FL, died peacefully on March 7, 2023, at Tidewell Hospice House with his life partner, Patty LaRoche, by his side. He is also survived by his mother and stepfather, Wilma and Clinton Beauford of Pittsburgh, and his sister, Kathy Smith. Ken was preceded in death by his father, Roland...
Contributed by PWSA | USA’s Director of Family Support Stacy Ward, MS As a parent, you know your child best and your input into the development of their Individual Education Program (IEP) is crucial. In addition to actively participating in discussions, goal development, and progress monitoring, creating a parent input statement that is incorporated into...
Today, as we work together to ensure that every member of our Prader-Willi syndrome community has access to the support, expertise, and resources needed to help our loved ones thrive, we need your help! Whether you have just begun your PWS journey or are well along your way, join us to help ensure PWSA |...
In response to yesterday’s news from Scorpion Capital regarding Harmony Biosciences, we have received the below community-facing statement. Harmony Biosciences shares information about the company’s drug WAKIX, which is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. If you have questions, please reach out to info@pwsausa.org. —————————————————————————- On behalf of...
Help us honor our PWSA | USA volunteers! Do you know someone who deserves to be recognized for their service and dedication to PWSA | USA's mission and the PWS community? Volunteer Appreciation Award nominations are now being accepted through Sunday, April 30, 2023 for the following awards: 2023 Advocacy in Action Star - This...
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.