On May 1, 2024, the first day of PWS Awareness Month, the Voice of the Patient Report was officially filed with the FDA! This timely filing marks a significant moment for the Prader-Willi syndrome community. The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on...
PWSA | USA is currently seeking research project applications with direct impacts on individuals and families affected by PWS. We are offering mini-fellowship grants to support providers in enhancing their understanding of PWS through clinical proctorships. Research priorities include expanding knowledge about PWS, applying therapies, and attracting new providers and investigators to the field. Funding...
Question: Female, 5 months, Deletion Have you seen an increase in infants being denied a G-tube? Our pediatrician recommended us for one after we’ve had a lot of trouble with the NG tube and put in the referral, but the surgeon said there’s a new study showing a 37% risk of complications and denied us...
with a contribution from James Towle James Towle, a 38-year-old living with Prader-Willi Syndrome, plays with the Great Blizzards of Massachusetts, Inclusive Ice Hockey. He recently had the opportunity to speak publicly about his experiences with hockey, some of the challenges of having PWS, and how he has overcome those to get out on the...
Big news! Soleno Therapeutics has announced a groundbreaking achievement: diazoxide choline (DCCR) has been granted Breakthrough Therapy Designation by the FDA for Prader-Willi syndrome (PWS). This marks a significant milestone as the FIRST-EVER designation for a drug developed for PWS. The designation underscores the FDA’s recognition of PWS as a serious condition and the potential...
Attention everyone in the Prader-Willi syndrome (PWS) community and beyond! We need your support NOW! We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Soleno Therapeutics’ investigational drug has shown remarkable promise in improving hyperphagia, reducing fat mass, and addressing challenging PWS-associated...
Here is a letter to share with your friends and family! Dear Friends and Family, Our loved one has a rare genetic disorder called Prader-Willi syndrome (PWS). This diagnosis has brought a lot of unexpected experiences to our family, both joyful and challenging. May is PWS Awareness Month and a great opportunity to help educate...
“We are all artists, and we all have beauty to share.” ― Laura Jaworski As parents, caregivers, and advocates, we grow accustomed to speaking up for our loved ones with PWS. At every doctor office or IEP meeting, every time they start a dance class or join a team sport, before sleepovers with friends or perhaps...
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...
Harmony Biosciences Holdings, Inc. is seeking participants for its TEMPO study, a global Phase 3 trial investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) in individuals aged six years and older with Prader-Willi syndrome (PWS). Pitolisant is a medication that could help manage sleepiness and behavioral issues in people with PWS. There...
Question: Female, 5, Deletion: What temps would you write in an IEP for kids to stay indoors? Example below 40 and higher than 80? What wording would you recommend? Nurse Lynn’s Response: The degree and severity of temperature abnormalities can vary from person to person. In short, I wouldn’t write down exact temperatures. I would use...
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...
Contributed by Denise Servais I recently had the opportunity to attend a luncheon hosted by Chad Greenway’s Lead The Way Foundation. Chad Greenway, a former Vikings football player, along with his wife Jenni and many Twin Cities leaders associated with the foundation, were among the 120 attendees. The foundation’s purpose is to support families with...
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...
Question: Male, 33, Deletion How much promise would a weekly injection of Ozempic or Trulicity have on my son for weight loss? Nurse Lynn’s Response: Thank you for your question. From the limited research on the PWS population and the use of GLP-1 medications, they do show some success in glycemic control but do not...
Contributed by Vonnie Sheadel Washington and Oregon Chapters Creating Interactive Map for PWS Families PWSA of Oregon and Washington are in the process of developing a Google map for PWS families to find each other in the Pacific Northwest. It will be a safe, secure and easy way for families to locate others in their area....
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.
