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...
We are excited to come together again in-person for the 37th PWSA | USA National Convention, June 21-24, 2023 in Orlando, FL! Leading up to this much-anticipated event, members of our PWS community are sharing their Convention memories and why it’s beneficial for others to attend! Below, PWS parent Julie Casey gives details about her...
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
Contributed by Lynn Garrick, RN Sleep health is essential for everyone. It is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep...
Written by Kim Tula, MS, CSW Abilities Midwest is an adult residential provider in Wisconsin that only serves individuals diagnosed with Prader-Willi syndrome (PWS).ย They currently operate three PWS-specific group homes: One in River Falls, WI and two in Watertown, WI. All of these homes are licensed through the state of Wisconsin as an Adult...
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...
Thanks to the generosity of an anonymous donor, PWSA | USA is offering scholarships for our upcoming 2023 National Convention, June 21-24, 2023, in Orlando, FL. Guidelines for submitting a scholarship application are as followed: You must be a first-time PWSA | USA National Convention attendee Scholarship funds can be applied toward a Conference registration,...
Have you ever walked away from an Individualized Education Program (IEP) meeting and thought to yourself, โThatโs not what they told me during the last meetingโ or, โWhy are we having the same discussions each meeting? This is a waste of time.โ Having an organized file that encompasses all documents regarding your childโs education will...
In an effort to bring together the PWS patient voice, PWSA | USA, IPWSO and FPWR are excited to host the first FDA Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Prader-Willi syndrome community. You won't want to miss this impactful event at PWSA | USA's 37th National Convention, June 21-24, 2023, in Orlando,...
We know that many of you want to make a difference in the lives of members of our PWS Community โ and we have the perfect opportunity if you, or one of your family or friends, are a CPA.ย Our fabulous treasurer is retiring in March after many years of excellent service to our association....
Join with several members of PWSA | USA's staff Tuesday, February 21, 2023 at 8:00 p.m. EST to learn the ins and outs of our 37th National Convention! We are excited to share more details and answer questions about this year's Convention events, speakers, opportunities for families, caregivers, and health professionals, and how you can...
The Chicago School of Professional Psychology is asking parents and caregivers in the PWS community to participate in a brief survey to investigate challenges that parents have when completing daily self-care skills with their child with PWS. This survey is for parents and caregivers with a child between the ages of 12-25 living with PWS....
When: February 16, 2023 at 8:00 p.m. EST Register TODAY for PWSA | USA's free February Advocacy in Action webinar, where several PWSA Arizona Chapter leaders will discuss the Arizona State Qualifier Campaign. PWS is only recognized in 14 States as an automatic qualifying condition. Join us as we bring you the leaders of our...
PWSA | USA's Family Support Team is asking the PWS community to share Messages of Hope that will be featured in our enhanced New Diagnosis Package. This important publication will be sent to new families who receive a PWS diagnosis. It is our hope that your messages will encourage families to see past the diagnosis...
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
Tickets for the 2023 Clint Hurdle Hot Stove Dinner (March 25, 2023) will be available for purchase on Tuesday, January 17, 2023! SAVE THE DATE for the 2023 Clint Hurdle Hot Stove Dinner, which will take place Saturday, March 25, 2023. Sip, savor, and support Prader-Willli Syndrome Association | USA while enjoying this outdoor event...
The Chicago School of Professional Psychology is looking for PWS caregivers to participate in a asynchronous computer training on medication and data collection procedures. Upon completion, you will be entered to win a $50 Amazon gift card! Click the button below to learn more about this opportunity and to find the training link. Thank you!
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...
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.
