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...
Contributed by Justice Rickenbach Ever since I can remember, I have been tired. Not the kind of tired you feel when you stay up too late or how you feel at the end of a busy day. The tired I feel is more like how you would feel if you were forced to stay awake...
In a powerful demonstration of community advocacy, several members of the Prader-Willi syndrome (PWS) community recently met with Representative Angie Craig (D-MN) to share their stories and advocate for those living with PWS. This meeting in Minnesota, which was scheduled as a follow-up to PWSA | USA’s 2024 D.C. Fly-In, highlighted the importance of ongoing...
Question: Male, 33 years-old, Deletion My son is mostly behaving, and he is not aggressive. However lately he gets up in the morning upset, anxious, and wants more food. For the rest of the day, he is OK. He used to take Cipralex. He does not want to take it anymore. Not that I have...
As part of our ongoing efforts to best serve the Prader-Willi syndrome community, we are introducing a new name for our podcast. Moving forward, PWSA | USA’s podcast will be known as PWS United! This change is based on valuable feedback we’ve received from the community. Some members are sharing there is occasional confusion between...
contributed by Anne Fricke Last year around this time, Freya climbed Mount Lassen (a 10,000+ foot volcano in Northern California). This year, her class went on another adventure, a backpacking trip to Mount Eddy. The mountain was a little smaller, but the camping trip was more challenging. Freya handled it all like a champ! This...
contributed by Amy McDougall “Alone, we can do so little; together, we can do so much.” – Helen Keller Community is such a powerful thing. Last year, I decided to start hiking in an effort to meet some personal goals. I reached out to another PWS mom in my state in hopes of finding a...
PWSA | USA is excited to share an update on the continuous advocacy efforts for the PWS community. We have received a letter from the U.S. Food and Drug Administration (FDA) in response to a petition submitted by the PWS Advocacy Coalition (submitted on July 31, 2024). This petition urged the FDA to prioritize the...
Question: Female, 40 years-old, Deletion Not every time, but a lot of the time, my daughter will feel like she needs help with her bowel movements, and she feels the need to reach in her rectum to complete the movement. She knows this is not good but worries that if she doesn’t it will come...
“‘A grandmother’s love is forever and always.’ Thank you and Happy Grandparents Day. We love and appreciate you so much!” Grandparents names: Left- Grandma Tilly (RIP) Right- Grandma Lisa Submitted by: Staishya Siller “Mamie, thank you for always playing and having fun with me! I miss you. Come back soon to visit!” Grandparent’s name: Alizeta...
contributed by Dini Rao As I think about the importance of newborn screening, I can’t help but wonder how this would have completely changed my family’s lives. My daughter Ayoni was diagnosed with Prader Willi Syndrome late at nearly five years old. At birth, she had many of the telltale signs of Prader Willi Syndrome...
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics’ DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency’s regulatory decision-making. As part of the Advisory Committee Meeting, interested community members are encouraged to share...
Question: Male, 25-years-old, unknown subtype Son, aged 25, was previously taking Propranol for blood pressure and anxiety. We were noticing increased anxiety and PCP just switched him to Lisinopril and Venlafax ER 75. Are these 2 meds found to be safe for patients with PWS?? Nurse Lynn’s Response: Unfortunately, your question is more complicated than...
contributed by Nancy Christoff My daughter, Nicole (37) has PWS and has been living independently in Senior housing (a five-minute walk from my home) for about 10 years. We’ve created a mini tailored group home without the group. I don’t know if a cat counts in the headcount – LOL. Nicole gets lots of day...
Welcome to PWS United, a podcast for the Prader-Willi syndrome community, brought to you by PWSA | USA. This podcast seeks to inform the community (and beyond) of the latest news in research, advocacy, and our family support offerings. By bringing together staff, volunteers, specialists in PWS treatment, representatives from biotech and pharmaceutical companies, caregivers,...
Contributed by Anne Fricke Trauma. Sometimes we don’t notice it in the moment. We are in the midst of the battle with our weapons ready, and it is only after we have grown accustomed to the fight that the battle rage starts to dissipate, the hum of adrenaline gives way to bird song, and our...
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.
