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...
For decades, Janalee Heinemann has been one of the most influential and beloved leaders in the Prader-Willi syndrome (PWS) community – a guiding force whose energy, vision, and compassion transformed PWSA | USA into the world-class resource it is today. Janalee’s journey began as the stepmother to Matt, a young man with PWS. That personal...
For more than three decades, Dr. Moris Angulo, MD, has been a tireless champion for people with Prader-Willi syndrome (PWS), in exam rooms, at conferences, across continents, and in the hearts of the families he serves. Born in the small town of El Tránsito, El Salvador, Dr. Angulo’s journey to becoming a board-certified pediatrician, medical...
Question: Female, 54 years old, unknown subtype My sister was recently in the hospital for CHF, low O2 and heart rate, and an obstruction in her stomach. She was placed on a NG tube for several days to allow her stomach to decompress. She is now at a rehab center. She is battling huge blisters...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Recent federal budget proposals may reshape how special education is funded and could pose real risks to students with Prader-Willi syndrome (PWS). A recent Undivided article, “Federal Budget Proposals That Could Impact Special Education,” notes several concerning shifts in policy (Undivided). While the administration is proposing $14.9 billion in IDEA Grants to States for fiscal year...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12...
Aardvark Therapeutics recently launched HERO, a global Phase 3 clinical trial investigating ARD-101, an innovative, orally administered treatment designed to help reduce hyperphagia (excessive hunger) and food-seeking behaviors in individuals with Prader-Willi syndrome (PWS). This randomized, double-blind, placebo-controlled trial is an important step toward identifying a potential new treatment option for the PWS community, and...
Question: Male, 17 years old, Deletion Subtype Nurse Lynn,Can rectum picking be a genetic condition?I’m aware of three instances of unusual behavior involving the rectum. Nurse Lynn’s Response: Rectal picking in individuals with PWS is not considered genetic in the traditional sense, meaning it is not directly caused by inherited genes specific to that behavior....
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...
submitted by Lisa Graziano, mom to Cameron (living with PWS) My husband and I attended our first PWSA | USA conference back in 1999 when it was held in conjunction with the Prader-Willi California Foundation, organized by Frank Moss (of PWCF) and Janalee Heinemann (of PWSA). Our son was just 6 months old and the...
Hear New Details About the TEMPO Clinical TrialTuesday, August 19, 2025 | 8:00 p.m. EST / 5:00 p.m. PSTHosted by PWSA | USA, Free Virtual Webinar via Zoom REGISTER HERE Join PWSA | USA and representatives from Harmony Biosciences in an upcoming free webinar to hear new information about the TEMPO PWS Clinical Trial. This...
Submitted by Carrie Ilijevich, PWSA | USA Marketing & Communications Director If you’ve been to a PWSA | USA event in the last few years, there’s a good chance you’ve seen (and maybe even posed in front of) something incredible that Melissa Rivas created. Melissa is not only an amazing mom to 7-year-old Sofia, who...
Question: Male, 36 years old, Deletion It was suggested to me by a doctor (not a PWS specialist) that those with PWS are deficient in the hormone leptin, and that replacing it could be an alternative way of helping with hyperphagia. Have you heard of leptin supplement as a treatment for hyperphagia? Nurse Lynn’s Response:...
On Saturday, July 26, 2025, the Americans with Disabilities Act will celebrate 35 years! This anniversary celebrates a victory at least a century in the making, upon which advocates must continue to build. The road to this legislative act was long, but there were dedicated advocates who fought along the way to ensure individuals with...
Question: Female, 40 years old, unknown subtype My daughter’s GP, and she herself, want to try Mounjaro injections for 6 months. She will be closely monitored by her nurse, her GP, her care team and family. She currently does not appear to have issues with gastroparesis but I want to prevent them by changing her...
Here’s Your Next Opportunity to Gather Together In-Person with the PWS Community! Celebrate PWSA | USA’s 50th Anniversary in St. Louis, MO Learn More and Purchase Gala Tickets After experiencing an amazing time together in Phoenix at the United in Hope International PWS Conference, we’re reminded how meaningful it is to gather in person –...
submitted by Stacy Ward Sybil Cohen has been a dedicated volunteer for PWSA | USA for many years, serving in numerous vital roles including chapter leader, board member, and parent mentor. Her unwavering commitment was especially evident at the recent United in Hope Conference, where she volunteered at the registration and check-in desk for the...
PWSA | USA is excited to announce the return of the Building Our Social Skills (BOSS) program this fall. We know how important social development is for individuals with Prader-Willi syndrome, and how challenging it can be. BOSS, funded by FPWR was created to provide a supportive, structured space for participants to build communication skills, boost confidence,...
Question: Male, 15 months old, UPD subtype My son has esotropia and amblyopia primarily affecting his right eye but intermittently seen in his left eye as well. Surgical correction has been discussed and currently we have been instructed to patch his dominant eye (left) for two hours daily. We would like to pursue the interventions...
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...
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.
