In a powerful week of advocacy, Dorothea Lantz, Director of Community Engagement at PWSA | USA, represented Prader-Willi syndrome (PWS) on Capitol Hill and at the 2024 NORD Breakthrough Summit in Washington, D.C., from October 20–22. The Summit gathered leaders across the rare disease community, including patient advocates, healthcare providers, researchers, and policymakers, all united...
Question: Female, 22 years-old, Deletion Does the association have a letter or document of some type that could be given to a doctor in an emergency situation, in order to give them a quick understanding of PWS and the potential medical impacts? Perhaps it could even be attached to a PWS patient’s medical record so...
Give the Gift of HOPE This Holiday Season! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity. Click Here...
contributed by Anne Fricke (This post picks up from “The Screening Appointment” if you would like to start there.) Baseline Appointment (1.5 hours, on-site): Spending a night in southern California is not my idea of fun or relaxation. During our first trip, Freya enjoyed the arcade on the pier and splashing in a slightly warmer...
Question: Male, 25 years old, Deletion subtype Our son has gained 45 lbs. in the last two years since living on his own (now 220 lbs.). He is independent and successfully holds down a job and has an apartment. Two questions: 1. We recently read that the average age of death is still 30 years...
This week, members of PWSA | USA’s Adults with Prader-Willi Syndrome (PWS) Advisory Board gathered in Phoenix, Arizona, for a multi-day meeting to discuss upcoming initiatives and programs. Among the key topics was planning for the Adults with PWS Conference, a half-day event that will take place during the 2025 International PWS Conference on June...
Book reviewed by Lisa Graziano, M.A., LMFT, PWS parent and long-time advocate Forces of Nature: A Memoir of Family, Loss, and Finding HomeWritten by Gina DeMillo WagnerI recently stumbled across this book and purchased it after learning it was written by a woman whosebrother had Prader-Willi syndrome. Amazon’s description reads, “Gina DeMillo Wagner’s brother Alan...
Question: Female, 62 years old, unknown subtype My sister has PWS. We live in Quebec Canada. There is so little information about how people with PWS age. We have reduced her meds recently due to aging (Bupropion by half and she is now taking Lorazepam to handle side effects). She takes medicine due to pre-diabetes....
On October 8, 2024, Soleno Therapeutics provided a regulatory update on DCCR (Diazoxide Choline Controlled-Release) tablets, which are currently undergoing priority review by the FDA as a potential treatment for hyperphagia in individuals with Prader-Willi syndrome (PWS). Although the FDA has moved forward with priority review, it has chosen not to hold an advisory committee meeting at this time. We have...
Contributed by Kristi Rickenbach I feel so alone.Why am I so sad?What did I do wrong?How am I supposed to go on?No one understands. Grief can leave you feeling isolated, depressed, and scared for the future. It often goes unnoticed by those around you as you continue with your daily routines. We learn to hide...
Question: Male, 47 years old, Deletion My son was diagnosed with S.I.R.S after a fall sent him to the hospital with chest pain. His white blood count was very elevated. I know P/W kids get lots of weird diagnosis but how common is this one? Systemic inflammatory response syndrome is a mouthful. Nurse Lynn’s Response:...
THE APPLICATION DEADLINE HAS PASSED. WE ARE NO LONGER ACCEPTING OPERATION HOLIDAY CHEER APPLICATIONS. ————————————————————————————————————— Thanks to the incredible generosity of an anonymous donor, PWSA | USA is thrilled to bring back Operation Holiday Cheer for 2024! This heartwarming initiative helps spread joy to families in need by easing the financial burden of the holiday...
contributed by Lynne Williams, mom to Jess, living with PWS Hi! My daughter, who is 27 years-old, has uniparental disomy (UPD) PWS, and lives in a group home. I contemplated independent living for her, and it was a very difficult decision to make. As a parent, you want the best for your kids, and being as...
Question: Female, 22 years-old, Unknown subtype I’m concerned about gastroparesis. I give my daughter one stool softener a day. Ok with her doc. She does not empty her stomach without picking at her bottom to stimulate. How do I address this issue? Nurse Lynn’s Response: This is actually very common for our individuals to rectal...
contributed by Susan Fries, mom to Roselyn, 7-year-old living with PWS “I feel like we are all waiting for that magic fix, and if it works for someone else then my kid must drink the kool-aid and it’ll work for them too. But we deep down know it doesn’t work that way as much as...
contributed by Anne Fricke The intention of this series is to shed light on the process of enrolling and participating in a clinical trial, as well as to create a space to openly share the many emotions that are involved when a family decides whether or not to join. Part of the decision-making process should...
contributed by Anne Fricke I lay awake in a pre-dawn haze the morning Freya was to take her first pill. We had been to Southern California twice already, a combination of 7 flights up and down the coastline, numerous hours of travel, and far too many airport meals, and I was still momentarily on the...
September 24, 2024 Dear Prader-Willi Syndrome Community, We are pleased to share an update on the 12-week, pivotal Phase 3 COMPASS PWS study evaluating the efficacy and safety of carbetocin nasal spray (ACP-101), an investigational drug, for the treatment of hyperphagia in Prader-Willi syndrome. The study was initiated in the United States in November 2023...
Halloween is just around the corner, and with it come questions and uncertainty for our PWS families. It's only a matter of time before candy and treats will being offered in schools and throughout the neighborhoods, and we want to know your tricks! The PWS community is invited to be a part of a special...
Question: Female, 6 months old, UPD My 6mo old tested positive for a UTI today (culture result: Klebsiella pneumoniae). She has no other symptoms besides occasional foul-smelling urine. One concern is the duration that the infection has gone untreated. I first noticed her urine about 2 weeks ago but second guessed for a while until...
In a few months, Pia Dorson and her family will be welcoming a service dog into their home. Their middle daughter, Zahra, is a 6-year-old living with PWS. While Zahra may be the catalyst for this family addition, Pia wanted to be sure that their other children would have access to this dog as well....
Contributed by Rachel Johnson People have called us “lucky” to have a service dog. I chuckle when I hear this because the reality is, we didn’t get a service dog for the fun of it. Although having Stanley in our lives is a true joy, we worked for him because we needed the help. Life...
Contributed by Winnie White I was not a dog person, but as parents, you will do whatever needs to be done to help your child. As Sandy Kay has gotten older and her food anxiety has significantly increased, we began to investigate other ways to treat anxiety in addition to medication through a doctor’s care. I talked...
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.
