Fifty years ago, on November 29, 1975, the Individuals with Disabilities Education Act (IDEA) was signed into law. This law ensures the rights of individuals with special needs and disabilities to receive a free appropriate public education (FAPE), including our loved ones with Prader-Willi syndrome. Without this law, many, perhaps most, of our loved ones...
The Indiana Medicaid Drug Utilization Review (DUR) Board Meeting will be meeting October 17, 2025, starting at 10:00 AM EST. Here’s how you can help: The Indiana Medicaid DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...
The Missouri Rare Disease Advisory Council Meeting will be meeting October 8, 2025 from 10:30 AM – 2 PM CDT. Here’s how you can help: The Missouri Rare Disease Advisory Council needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS....
Why do P&T Committees and DUR Boards Matter for PWS Treatments? For families living with Prader-Willi syndrome, access to new therapies isn’t just about FDA approval. Once a drug is approved, there’s another critical step that determines whether patients can actually receive treatment: coverage decisions made by Pharmacy & Therapeutics (P&T) Committees and Drug Utilization...
The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025. Here’s how you can help: The Alaska Drug Utilization Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...
The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger)...
The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Drug Formulary Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the...
The Michigan Pharmacy and Therapeutics Committee will hold a Drug Utilization Review (DUR) Board meeting on September 2, 2025, at 6 PM. Please submit your comment by August 20, 2025. Here’s how you can help: The DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life...
Rare Across America, sponsored by the EveryLife Foundation for Rare Diseases, is held every August when Congress is on summer recess and our elected officials are in their home districts. It is an opportunity for advocates to meet with their Members of Congress and staff at their in-district offices and educate them on the issues...
The Colorado Department of Health Care Policy & Financing will hold a Drug Utilization Review (DUR) Board meeting on August 12, 2025, from 1:00 to 5:00 p.m. (MT). This important meeting will review medications covered by Health First Colorado (Colorado’s Medicaid program) including those that could change the lives of individuals with Prader-Willi syndrome (PWS)....
We are thrilled to share that Prader-Willi syndrome has been included in the Department of Defense’s (DOD) Peer-Reviewed Medical Research Program (PRMRP) in the 2026 Fiscal Year Defense Appropriations Bill. This is a MAJOR milestone for our community! This inclusion, passed out of the Senate Appropriations Committee, is the result of tireless advocacy efforts that...
Florida has officially launched the Sunshine Genetics Act, a first-of-its-kind initiative offering free, voluntary whole genome sequencing (WGS) for all newborns—and PWSA | USA was honored to stand at the forefront of this historic moment for rare disease families. On July 9, 2025, leaders in science, medicine, and policy gathered at Florida State University’s Interdisciplinary...
Six of our dedicated PWSA | USA Advocacy Ambassadors (Dorothea Lantz, Elaine Towle, Jessica Kempa, Sheri Mills, Michelle Torbert and Jennifer Garzia—also joined by her family, including her son Rocco who is 20 years old living with PWS) traveled to Washington, D.C. last week to take part in Patients Rising’s 4th annual “We the Patients”...
submitted by Dorothea Lantz, PWSA | USA’s Director of Community Engagement PWSA | USA Advocacy Community Update – Capitol Hill Recap (May 5–8, 2025) From May 5th–8th, six of our PWSA | USA Advocacy Ambassadors joined forces with the Council of Parent Attorneys and Advocates (COPAA) and key partners from the rare disease industry to...
Your voice matters! Florida has the opportunity to lead the way in early genetic screening for rare diseases like Prader-Willi syndrome (PWS). By supporting the Sunshine Genetics Act (HB 907 / SB 1356), we can help ensure that newborns receive critical genetic testing, leading to earlier diagnoses and improved care for individuals affected by rare...
Rare Disease Week on Capitol Hill 2025 was a transformative experience for the Prader-Willi syndrome (PWS) community and the broader rare disease advocacy movement. From February 24–26th, 36 advocates from PWSA | USA, including 10 individuals living with PWS and members of the Advocacy Ambassador program, traveled to Washington, D.C., to share their stories, educate...
Part of our PWSA | USA team, along with fellow PWS advocates, attended Rare Disease Week in Washington, DC, February 24-26. Our advocates attended group lectures and sessions alongside other rare disease advocates the first part of the week, then met with their elected officials on Wednesday. Our advocates say they had a successful experience...
Our advocates are in Washington, D.C. this week for Rare Disease Week (February 28 is Rare Disease Day!). On Wednesday they will be meeting with their representatives to advocate for PWS and the rare disease community. While not everyone can travel to D.C. themselves, you can get in touch with your representative via phone or...
We’ve made it easy to contact your representative about a very important issue affecting the PWS community. Read below to learn about this issue then click the button at the bottom to be taken to a pre-written letter. Fill in your name, street address, zip code, phone, email and hit send. The Biggest Threat to...
We are thrilled to celebrate a major step forward for individuals living with Prader-Willi syndrome (PWS) and the broader rare disease community in Illinois! On February 4, 2025, SB1651, filed by Senator Morrison, and HB2541, filed by Representative La Ha, were introduced—marking a critical move toward better support and services for those affected by PWS. ...
On Friday, January 24, 2025, the Texas Prader-Willi syndrome (PWS) community achieved a significant milestone during the Texas Governor’s Committee on People with Disabilities meeting. Our dedicated advocates Tim Joniec and June Finnerty testified on behalf of individuals living with PWS in Texas, shedding light on critical unmet needs and proposing policy changes to better...
The Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) would like to take a moment to acknowledge a significant leadership transition at the U.S. Food and Drug Administration (FDA). As Dr. Patrizia Cavazzoni steps down as Director of the Center for Drug Evaluation and Research (CDER), we express...
Launching on January 13, 2025, the PWS Advocacy Master Class is a six-week program designed in collaboration with Patients Rising. It provides a robust curriculum for anyone passionate about becoming an effective advocate for PWS. Course Highlights: – Congress 101: A deep dive into how laws are made and how to engage with policymakers. – Pharmacy...
Dorothea Lantz, PWSA | USA Community Engagement Director, and Elaine Towle, PWSA | USA volunteer advocate, recently represented the rare disease community in critical meetings on Capitol Hill with Sen. Shaheen, Sen. Hassan, Sen. Rubio, and Sen. Braun. These discussions emphasized advancing legislative priorities for 2025, including rare disease drug development, improving Medicaid access for...
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
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.
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.
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.
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.
