As parents and caregivers, we want to see our loved ones successful in their relationships. Making connections with peers is a valuable part of adolescence and being in school. Some of the characteristics of PWS can make this challenging. Struggles with transitions, egocentrism, slower processing, excessive daytime sleepiness, and, of course, food concerns, can sometimes...
Question: Male, 41, Deletion Our son is getting a new housemate, male, age 43, also has PWS. He’s getting testosterone injections biweekly. No doctor has ever suggested that to us for our son. What are the benefits and what are the concerns of testosterone injections in adult male PWS individuals? Thank you! Nurse Lynn’s Response...
contributed by Justice Rickenbach My name is Justice Faith, and I am 20 years old. I have: Prader-Willi syndrome Narcolepsy with cataplexy Scoliosis Gastroparesis and Central adrenal insufficiency I have been dealing with many health issues my whole life. Because of my rare conditions, I have many fears. I worry about my health, friends, and,...
Question: Female, 33, Deletion My daughter went through several programs of weight loss in Pittsburgh. Their program saved her life. They don’t offer that program anymore. Are there any other programs that can help us with her weight? She’s very heavy again. When Covid hit, it got out of control again and I feel like...
Sibling relationships can sometimes be the most challenging, and the most rewarding. Introduce a sibling with PWS, and this spectrum often becomes even more extreme. The friction and conflict may be far more frequent and difficult to manage, but the connections and support may be far sweeter. So how do we navigate these relationships? How...
Question: Male, 38, Deletion I have a question about what I think is confabulation. My son occasionally says things that are just not true, and I don’t really know how to respond. I don’t want to argue with him, but I do want him to know that what he said is wrong. The first time...
Join us for the PWS – Aging Research and Health Update Webinar series, featuring Lynn Garrick, RN, MSN, and Barb Dorn, RN, BSN. Part 1, on Tuesday, July 30, 2024, at 8:00 p.m. EST, will highlight current research on aging in PWS and common health issues reported by caregivers. The speakers will cover risk factors,...
On June 28, 2024, Soleno Therapeutics announced the company officially submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for DCCR (diazoxide choline) extended-release tablets. This new treatment targets Prader-Willi syndrome (PWS) in individuals aged 4 and older with hyperphagia. CEO Anish Bhatnagar, M.D., says, “Submission of the DCCR NDA to...
Contributed by anonymous As our loved ones with PWS become adults, they want the same things as anyone else. They want to feel listened to, valued, have friendships/romantic relationships, have a sense of purpose, and live independently. We need to consider how we can accomplish this while considering our loved ones’ individual abilities and needs. Transitioning Into Adulthood Planning...
June is National Scoliosis Awareness Month. Scoliosis is a condition in which a person’s spine has an irregular curve. According to Pediatric Orthopaedic Dr. Harold van Bosse, MD, “Children with Prader-Willi Syndrome have about a 70% risk of developing scoliosis before the end of growth.” It is important for families to be aware of the signs, risks, and...
Question: Female, 21, Deletion My daughter with PWS (deletion) is wondering how common it is for females to be told by an endocrinologist to take estrogen and progesterone for the rest of their lives. She has already developed a blood clot (now resolved) and was told by another doctor that hormonal therapy could be a...
TREND Community is a “community-powered data analytics company, unlocking people’s conversations about living with rare and chronic diseases, delivering actionable, real-world insights, and driving progress in health care.” For 2.5 years PWSA | USA has been partnering with TREND Community to turn our online support groups into a source of real-world evidence. By collecting the...
Summer is well underway, and parts of the U.S. are experiencing extreme temperatures and high heat index warnings. While these conditions can pose a threat to anyone, they especially put our loved ones with PWS at risk for heat stroke and heat exhaustion. Due to the dysfunction of the hypothalamus, Individuals with PWS struggle to...
In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families. This initiative, undertaken with the active involvement of several community members, seeks to ensure...
Question: Male, 17, Deletion How can I address my son’s behavior? Lately he gets mad and starts throwing things around, the more I ask him to stop the angrier he gets. If I ground him, he does exactly the opposite of what I ask him to do. Also, at school, teachers have told me should...
contributed by Anne Fricke When Language Is an Obstacle The first time we traveled outside the US with Freya, I packed, as the saying goes, “everything but the kitchen sink.” Along with our ergo baby carrier and a cheap stroller we bought for the occasion, we traveled with our cooler for the growth hormone and...
The 10th Annual Clint Hurdle Hot Stove Dinner was an extraordinary success, held at the Bradenton Country Club in Bradenton, FL, on March 23, 2024. Hosted once again by the dedicated Clint and Karla Hurdle, the evening was a testament to the power of community. The Hurdles, who have a 21-year-old daughter, Madison, living with...
Kasey Bedard, PhD, and her team at The Chicago School are seeking caregivers of children diagnosed with Prader-Willi Syndrome (PWS) who exhibit repetitive verbal behavior for a research study at The Chicago School. This study, part of a dissertation project, aims to test interventions that caregivers can implement at home. Study Details: – Duration: 2-3...
contributed by Jamie Prentice, Mom to Logan, 31, living with PWS Advice for Transitioning into Adulthood It is important to gather information and familiarize yourself with SSI, your state’s Department of Disabilities and Special Needs, Guardianship, Stable Accounts, and Special Needs Trusts long before your child becomes an adult. I would start taking workshops or...
Question: Male, 16, UPD: My son has had issues with bowel movements and constipation his entire life. He spends long amounts of time in the bathroom and tells me that he feels like there was more that needed to come out, but he can’t get it out. A few times lately there has been blood...
*In the interest of space, please note that when we use the term “Dad”, we not only refer to biological fathers, but also those male figures who are an outstanding, constant, and loving presence in your loved one’s life. And you single moms filling both roles, this is for you as well! We know that...
Dr. Destiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. PWSA | USA had the opportunity to sit down with Dr. Pacha to understand the meaning behind the book and what inspired her. She describes the book as...
When we receive a diagnosis of Prader-Willi syndrome, often we also receive a litany of “cannots” and “will nevers”. We may let ourselves dwell, even if momentarily, in that world of negatives and adventures never-to-be. We mourn the future we thought we once possessed, thought our loved one possessed. Some would argue it is part...
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.
