Question: Male, Newborn, Subtype Unknown How soon should a person who has been diagnosed with PWS start hormone therapy (specifically HGH)? Nurse Lynn’s Response: A child can be assessed for growth hormone treatment at any age. Clinical experience suggests that Growth Hormone treatment can be beneficial for an individual with PWS as early as 2-3...
National Volunteer Week As we head into National Volunteer Week, we’d like to take a moment to acknowledge the many wonderful volunteers that help the PWS community through PWSA | USA. Our volunteers help us continue striving to meet the needs of families across the country and beyond. Many parents, grandparents, siblings, and other caregivers...
Question: Male, 11, Deletion My grandson has behavioral issues, and we try to help as much as possible when he is over. He is on medication, but his behavior seems worse at times. For instance, when he gets mad because he can’t get what he wants, especially in a store, will sit down and cry...
Additional Details from Soleno Therapeutics: Dear Members of the PWS Community, We are so grateful for your response to our recent letter requesting photos for an upcoming opportunity to raise awareness and understanding for the PWS community in Times Square on PWS Awareness Day. The number of beautiful photos and notes we’ve received has been...
Contributed by Anne Fricke The quotes in this blog come from the transcript of an NPR Talk of the Nation broadcast, “Siblings with Special Needs Change Childhood”, that aired on Sept. 25, 2012. Don Meyer, the person quoted, is the founder of the Sibling Support Project. As the parent of a child with PWS, I...
Transcript from an interview by Carrie Larsen, Director of Marketing and Communications for PWSA | USA with Leora Saacks, adult sibling to Andrea (living with PWS). Interview log: I’m Leora, I’m Andrea Saacks’ younger sister. Andrea is 2 years older than me; she has Prader-Willi syndrome, and we live in Philadelphia. I live about half...
Contributed by Carrie Bell PWS Travel Tale When we first got Grace’s diagnosis, I remember thinking, “Well, I guess we’ll never be able to travel again. And we’ll DEFINITELY never cruise again.” Because let’s face it, cruises are synonymous with food. How wrong I was! Last month our family of nine flew from Kansas City...
This year, the #RAREis Scholarship Fund, in partnership with the EveryLife Foundation for Rare Diseases, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org. The program was established in 2020 to enrich the lives of adults living with rare diseases by providing...
The first couple days, months, and years into a PWS diagnosis can be scary and overwhelming. Navigating a PWS diagnosis can come with a lot of fast and unpredictable changes. Our Family Support team is always here to offer HELP & HOPE. From your first days in the NICU to settling into life at home,...
Question Female, 15, Deletion: Do you happen to know of any standard of care as far as hormone support or instigating a menstrual cycle in females with PWS? Is there any harm in waiting to initiate a cycle? I know a lot of women and girls with PWS never start their period without medical intervention,...
Neurodiversity, a term coined by Australian sociologist Judy Singer in the mid-1990s, is a social justice movement that seeks to bring awareness, equality, and inclusion to people of various neurological abilities. According to Harvard Medical School, “The word neurodiversity refers to the diversity of all people, but it is often used in the context of...
Contributed by Jennifer Andrews A diagnosis of PWS requires families to learn all sorts of new things, among them medical procedures we may not be familiar with. A fairly common one, the sleep study, can be a little daunting when you don’t know what to expect. Prader Willi Syndrome can manifest with a variety of...
Contributed by Anne Fricke There was a time when we thought the refrigeration needs of Freya’s growth hormone alone would hinder our travel and keep us home more than we desired. We love our home and enjoy being here, but traveling is an important aspect of life for my family. We have had to make some...
PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort & Spa in Phoenix, Arizona! The conference theme, “United in Hope”...
Question: Female, 18, deletion, Arkansas: She has diabetes, one kidney does 25%, now even more increased anxiety. The first time we are trying anything for anxiety. The Dr is giving her Lexapro- the generic. Is there a certain one recommended? Also, is there a buildup or psychosis danger? Nurse Lynn’s Response: Thank you for your...
Join PWSA | USA and the team from Harmony Biosciences on Tuesday, March 12th at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the upcoming Phase 3 registrational TEMPO study, a randomized, double-blind, placebo-controlled, multicenter, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS,...
Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about...
For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather...
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” —The Lorax, Dr. Seuss Contributed by Jennifer Andrews, Advocate and Mom to Josephine A reluctant, “OK.” That’s how I got involved in advocacy with PWSA. Pretty unexciting, isn’t it? Well, so is the first plop when you throw...
National Caregivers Day, the third Friday in February (February 16th), was founded in 2015 by the Providers Association for Home Health and Hospice Agencies. This is a day to recognize caregivers of all types, family, professional, independent, private duty, and informal. We want to first express our gratitude, appreciation, and support for all caregivers. From...
Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the...
Here is a wonderful opportunity for families to learn valuable knowledge and skills to help assist their loved ones with PWS. On Tuesday, February 27, 5pm Pacific/ 8pm Eastern, Latham Center’s Director of PWS Services, Patrice Carroll, LICSW, will be leading a Family Support Webinar. This webinar will help to define the challenges that lead...
February 29th, Rare Disease Day, is just around the corner! PWSA | USA and PWS advocates will be meeting in Washington, D.C. to make their voices heard at Rare Disease Week. To date, there are over 10,000 rare diseases, 95% of which are without FDA approved treatments. 70% of genetic rare diseases start in childhood...
Meet our advocate, Kayla Day, mom to Luella, age 4 with PWS. Contributed by Kayla Day After having my daughter and receiving a late diagnosis of Prader-Willi syndrome, it took years before I could discuss it with others. In these 4 1/2 years, I have met amazing families and staff through PWSA | USA. The...
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.
