With the start of a new year just around the corner, we want to take this opportunity to share a heartfelt thank you to everyone in our community and to those who have supported PWSA | USA. We have several accomplishments to celebrate from this past year, including: Hosting our firstย Volunteer Summit and giving 30...
As we wrap up 2022, we want to recognize the amazing advocacy efforts our community helped us carry out over the past year. Your support, involvement, and VOICE led to many accomplishments, including taking our advocacy efforts to new heights (literally) and laid the foundation for more incredible work to continue in 2023. PWSA |...
PWSA | USA's Family Support team has been hard at work conducting trainings around the country, both virtually and in-person, to assist those who support individuals affected by Prader-Willi syndrome (PWS). In 2022 alone, our Family Support Director Stacy Ward, MS and Alterman Family Support Counselor Kim Tula, MS, CSW gave 18 trainings to school...
Registration is NOW OPEN for PWSA | USAโs 37th National Convention! We invite you to join us June 21 โ June 24, 2023, in sunny Orlando, Florida at the Hilton Orlando Buena Vista Palace. PWSA | USAโs Convention will provide exciting opportunities to learn, connect (and reconnect), and hear about the latest PWS research. This...
Announcement from PWS Global Registry: See infographic with visual data below. ----------------------------------------------------------------------------------------- As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registry...
PWSA | USA has been informed that Harold J.P. van Bosse, MD FAAOS, joined the Orthopedics team at SSM Health/Saint Louis University/Cardinal Glennon Children's Hospital in St. Louis, MO. "I look forward to continuing my work with patients and families of children with Prader-Willi syndrome," said Dr. van Bosse. If you are interested in scheduling...
We are happy to share that PWSA | USA has been selected as a charity for the NFL's 2022 My Cause My Cleats campaign for the second year in a row by Denver Broncos' player Caden Sterns.ย Caden is once again dedicating his one-of-a-kind cleats (pictured above) to his friend, Brooklyn, who is living with...
With monthly donations from caring supporters like you, we can do more good every day. We are looking for 23 people to kick-off 2023 with more HOPE. Simply sign up as a PWSA | USA recurring donor on Facebook at the button below, and your gifts will be matched by the social media platform. Here...
Are you planning to make a year-end gift? Giving Tuesday, which falls on November 29th this year, is the perfect opportunity to show your support! Thanks to the generosity of a group of anonymous donors, your Giving Tuesday donation and any donations made to PWSA | USA's Angel Drive through December 31, 2022, will...
PWS sibling Austin, 14, has been using his new entrepreneurial skills to raise money for PWSA | USA and awareness for our rare disease community in honor of his sister Lola. How? By making and selling jam! Read below to find out how Austin came up with this idea, how much he has raised so...
Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most importantโand one of the most often forgottenโthings you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.ย November is recognized as National Family Caregiver Month....
Be a PWSA | USA Selfless Elf this holiday season and give the gift of Hope and Support to PWS families! Tell your family and friends that taking action for PWS is at the very top of your holiday wish list. Click the button below to sign up as a Selfless Elf, and start encouraging...
PWSA | USA is pleased to announce a donation from the private non-profit organization, Burlington Stores Foundation, made possible by Burlington Stores, the national off-price retailer. The Foundation focuses on providing funds to qualifying non-profit 501(c)(3) organizations that are solely nominated by Burlington employees nationwide. We are excited to use this grant to support our...
Join us for an Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD) at PWSA | USA's 37th National Convention, June 21-24, 2023! This is an FDA program and the first for our PWS community! On Thursday, June 22, 2023, in conjunction with our PWSA | USA National Convention in Orlando, Florida, PWSA | USA will host an...
As part of the NFL’s Annual ‘My Cause My Cleats’ campaign, Denver Broncos Safety Caden Sterns selected PWSA | USA as one of his charitable causes! My Cause My Cleats celebrates the positive impact that players have made in communities across America and provides players with an opportunity to highlight the cause-related work they are...
Due to the generosity of an anonymous donorโs gift, PWSA | USA is able to bring holiday cheer to families in need this holiday season! We will identify a select number of families to receive gift cards to be used to help ease the financial stresses of the holidays. To be considered, please fill out...
It has been said that each of us needs just three things to be truly happy in this world: someone to LOVE, something toย HOPEย for, and something toย DO. Together with our Prader-Willi syndrome community near and far, our mission requires all three. WE LOVE:ย They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients,...
This morning, PWSA | USA received new information from Harmony Biosciences regarding its Phase 2 study of pitolisant. This study's purpose is to evaluate the safety and efficacy of the drug in patients with Prader-Willi syndrome (PWS). The company shared the following community-facing statement: "Today, Harmony Biosciences announced topline data on the primary outcome, excessive...
Contributed by PWSA | USA's Family Support Team The Centers for Disease Control and Prevention (CDC) has shown an increase in Respiratory Syncytial Virus (RSV) infections in multiple areas of the US https://www.cdc.gov/rsv/index.html. RSV infection can cause a variety of respiratory illnesses in infants and young children. It most commonly causes a cold-like illness but...
PWSA | USA Board of Directors member John Lens hosted the 13th Annual Hunter Lens Golf Tournament alongside his family on October 1, 2022 in support of the organization and in honor of his son, Hunter, who is living with PWS. "On October 1st, the we hosted our 13th annual Hunter Lens PWSA Golf Event...
We want to share a heartfelt thank you to Michelle Spring and her family for hosting their 2nd Annual Answers for Audrey Trivia Night in support of PWSA | USA and in honor of Michelle's daughter, Audrey, who is living with PWS. "We held our 2nd annual (Trivia) Answers for Audrey and it was a...
Sent on behalf of Kasey Bedard, PhD, BCBA-D Do you have experience toilet training your child with PWS? We need your help! We are recruiting for a survey study investigating the stressors and challenges of toilet training children with PWS. If you are at least 18 years of age, a caregiver of a child with...
Does your child living with PWS skin-pick? Sent on behalf of Kasey Bedard, PhD, BCBA-D Join a study evaluating the impact of a behavior-analytic caregiver training program on skin-picking in children with Prader-Willi Syndrome. Participation is fully remote. Training will take place across eight weeks, for 1-2 hour per week. All sessions will be recorded....
Could your loved one living with PWS benefit from more movement in their life? PWS parent and Pilates Teacher, Joakim Valsinger is offering FREE Pilates sessions for families living in Nevada, more specifically the Henderson/Las Vegas area, on Monday, October 17, 2022. Joakim says he has used his skills as a Pilates Teacher to help...
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.
