Contributed by Christopher Rich, Utah PWS Association Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those...
Important information regarding this exciting milestone: Rare Disease Research (RDR), located in Atlanta, GA, is now welcoming children with PWS and their families to their clinicfor screening into this trial. The duration of active treatment in this study is 13 weeks. In a preclinical study in animals, physiological and behavioral symptoms were normalized within six...
Harmony Biosciences has reaffirmed its confidence in the strength of WAKIX® (Pitolisant) patents, after receiving a positive ruling from the U.S. Patent and Trademark Office (USPTO) rejecting the request for reexamination. WAKIX® is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. Read Harmony Biosciences' community-facing statement below: We are pleased...
Thank you to everyone who submitted an application to attend PWSA | USA's first-ever Moms' Retreat, October 12-15, 2023, in Palm Spring, California! On Friday, August 18, 2023, 30 applicants were randomly selected to attend the event. Our staff will be reaching out to these individuals to provide additional details and collect information. Below you...
Aardvark Therapeutics recently announced the drug company has received Pediatric Disease Designation for PWS from the U.S. Food and Drug Administration (FDA), and will expand its Phase 2 clinical trial of oral ARD-101 in young adults with PWS. According to Aardvark Therapeutics, this FDA designation means the company is eligible for a Rare Pediatric Disease...
Individuals and families affected by PWS who are living in Egypt and the Middle East now have an established community to find help and hope. PWSA Egypt and Middle East was officially founded on June 1, 2023 by Walaa Mohamed, mom to Ahmed, 13, living with PWS. PWSA Egypt & Middle East will serve the...
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. But what about the feelings of loss associated with living with PWS? Is this a...
Mr. & Mrs. Steven & Tara Davis of Wilbraham, Massachusetts tied the knot this past weekend and celebrated their love by "Kissing for a Cause" during the reception! As a long-time friend of Melanie McDonald, mom to Josephine, 5, living with PWS, Tara wanted to raise money for PWSA | USA in honor of Josephine...
Contributed by Christopher Rich, Utah PWS Association Among the exhibitors at this year's PWSA | USA National Convention was the Utah PWS Association, which focused on food security and its role in managing PWS symptoms. The exhibition booth showcased practical strategies and innovative solutions to create a controlled environment, emphasizing the importance of food security...
On Friday, July 28, 2023, PWSA | USA's Special Edition Pulse will focus on back-to-school and offer helpful tips from our Family Support team as well as how to best utilize our School Success resources. We also want to hear from YOU, our PWS community, on what has worked for you / your loved one...
You or someone you love could be part of developing new therapies for Prader-Willi syndrome. Learn about Gedeon Richter's research study KITE-PWS, also known as RGH-706-003, to evaluate an experimental drug for hyperphagia in people with Prader-Willi syndrome. The oral drug RGH-706 works by blocking melanin-concentrating hormone (MCH), which is a key part in the...
July 12, 2023 – The Prader-Willi Syndrome Association | USA (PWSA | USA) announces the resignation of its CEO, Paige Rivard, MBA. Paige held the CEO position for the past three years and has led many efforts to advance awareness, research opportunities, and provide support for families in the Prader-Willi syndrome (PWS) community. The association...
Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64). When asked...
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead On June 24, 2023, the last day of PWSA | USA’s 37th National Convention, seven individuals who have gone above and beyond to not only spread the mission of PWSA...
Anyone can bid on our amazing Hope United Gala Auction items! Click the images below to check out just a few of the 40+ experiences, sports memorabilia, jewelry, baskets, and more. There's truly something for everyone to enjoy.
PWSA | USA received information from Harmony Biosciences that the company announced positive findings from the Phase 2 study of its drug pitolisant, a treatment for excessive daytime sleepiness (EDS) in people with Prader-Willi syndrome (PWS). The data was presented at the 37th Annual Meeting of the Associated Professional Sleep Societies (APSS). According to Harmony...
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!...
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...
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.
