A month ago, Freya transitioned from the 77-day double-blind portion of the Pitolisant trial to the open-label extension, which will last at least a year or as long as she is willing to participate – whichever is longer. If you’ve been following this blog series, you know I went into this with feelings of trepidation...
Question: Male, 9 years old, Deletion subtype My son is 9 years old and weighs 130-135 pounds. He eats every 10 minutes. Then throws up and eats some more. We are seriously running out of food cause he eats so much and we don’t have enough food for everyone. How can we better control his...
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...
contributed by Cocoa Ma (Mom to Lenny, a 12-year-old living with PWS) Lenny has been passionate about art since he was 4 years old. Over the years, his dedication has led to several international awards, and his art has become not just a creative outlet but also a way for him to give back to...
As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion. Our story began in 1975, when Gene and...
Imagine navigating the challenges of a rare diagnosis without access to the resources or support you need. For families and individuals in the Middle East affected by Prader-Willi syndrome (PWS), this was their reality – until recently. Thanks to the dedication of passionate advocates and the support of several PWS organizations, new doors of opportunity...
Question: Female, 3.5 years old, UPD subtype Hello, I’m from Ontario Canada. We just received a diagnosis a couple of weeks ago. I see most of the children on this support group are being diagnosed within weeks of birth. Is PWS routine testing with your newborn screen? Just curious as I knew something was wrong...
From PWSA | USA’s CEO, Stacy Ward, MS, BCBA To our incredible PWS community, As 2024 is coming to an end, I want to take a moment to just say thank you. I am so grateful to each of you for placing your trust in us and allowing us to walk alongside you during life’s...
Question: Female, 5 months old, Deletion subtype My baby is 5 months old. The growing is not fast, 5 month looks like 2 months.What do I do? Nurse Lynn’s Response: I’m sorry to hear about your concerns regarding your baby’s growth, here are some suggestions: Consult with a Pediatric Endocrinologist: Schedule regular check-ups to monitor...
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...
Contributed by Karin Sweeney As a military family we introduced Klara (14 with PWS) to running very early on, seeing as her active-duty dad had to run almost every day for 21 years. She hopped and skipped her way through a color 5k race for the first time at 5 years old, but her true...
Advocating for individuals with Prader-Willi syndrome (PWS) means embracing every voice and every story. At PWSA | USA, we believe that expanding diversity efforts is essential to ensure every family feels seen, heard, supported, and receives their PWS diagnosis as early as possible. The Power of Inclusion For Dorothea Lantz, Director of Community Engagement at...
Question: Female, 66 years old, unknown subtype My sister has been on 5mg Lorazepam 2 times a day for anxiety for ten years. Since this drug was added to her regimen her behaviors have been manageable with few periods of aggression. In the past she has been extremely out of control, even to the point...
contributed by Elaine Towle My son James, age 38, has lived outside of our home for over 13 years. After he graduated from high school at age 18, he attended community college close to home. Three and a half years later, he graduated with an Associate Degree in General Studies and a special education certificate. ...
Question: Female, 22 years old, Deletion subtype My daughter is 22 and has hit 375lb. I feel helpless. She is diabetic and we have struggled to get it under control. She has been on Ozempic for a few years now and has not lost any weight, but her sugars levels have come down some. Should...
contributed by Anne Fricke, mom to Freya (13, living with Prader-Willi Syndrome) Freya’s third and fourth appointments for the Harmony TEMPO PWS trial to study whether pitolisant is an effective treatment for excessive daytime sleepiness (ESD) in individuals with PWS, were simply routine and a lot like the second appointment. Lab work, caregiver questionnaires, counting...
Question: Male, 5 weeks old, Deletion Our baby was diagnosed with Prader-Willi Syndrome at 3 weeks old. He is 5 weeks old, in the NICU. My family has been reading about how important growth hormone treatment is. We want to get our baby started on it but not sure if he is too little. Should...
Finding time for ourselves as caregivers of individuals with PWS is necessary for our well-being, though it may be challenging, especially when we need to have reliable and safe supervision for our loved one. Not only do we need to find someone trustworthy, but we also have to ensure they are well-versed in the challenges...
Dear PWS Families, We understand that hearing about the FDA’s extension of the review period for DCCR (diazoxide choline controlled release) may bring a mix of emotions, from hope to concern. Please know that this is a normal and expected part of the FDA’s thorough process, especially for a rare disease medication that has been...
On Tuesday, November 26, 2024, Soleno Therapeutics shared an important development regarding the New Drug Application (NDA) for DCCR (diazoxide choline) extended-release tablets—a potential treatment for individuals with Prader-Willi syndrome (PWS) aged four and older who experience hyperphagia. The U.S. Food and Drug Administration (FDA) has extended the review period for this NDA, pushing the...
contributed by Jordan Zak, mom to Sawyer (living with PWS) On June 27th, 2021, we welcomed our first son into the world. Grant was born with Trisomy 18 and due to heart complications, he passed away on June 29, 2021. Our hearts were broken but we knew his life had meaning and there was a...
Question: Male, 15 years old, unknown subtype Hi there, Nurse Lynn. I have to ask this question; my son is 15 and he is constantly masturbating! I mean, I know teenage boys do this. It just seems an extreme. Should I be worried? Nurse Lynn’s Response: Obsessive-compulsive-like tendencies are common in individuals with PWS. These...
How do we prepare for the holidays? Even in “typical” homes, preparing for the holidays can be challenging. Our planning may be filled with questions like who is hosting, who is bringing what dish, who is invited, which family are we visiting on which day, who gets the presents, who makes the mashed potatoes, is...
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.
