Contributed by Anne Fricke We finally locked the refrigerator! I did not expect my daughter’s reaction. Freya is 12, living with PWS, and while food seeking has not been a big challenge in our lives, it was starting to creep in. For the past few years, we’ve managed by ensuring we put leftovers away shortly after meals....
“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 an hour from where Andrea lives in her group home,” said Leora Saacks, sister to Andrea, 52, living with PWS. Though Leora has older children and a busy...
PWSA | USA is excited to announce that thanks to the dedication and hard work of our Advocacy Ambassador, Dr. Erin Carter-Cooper, PhD, Ohio Representative Rose Sweeney (D - District 16) and Representative Gayle Mannin (R – District 52) have jointly filed legislation that will make Prader-Willi syndrome a recognized developmental disability in the State of Ohio!...
We are excited to share PWSA | USA's 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During the Fly-In, we will learn about Policy affecting the PWS community, hear from policy makers, and continue our...
We are excited to share that a new children's book centered around PWS is now available to pre-order! It Starts with Hello: Katie's Story about Prader-Willi Syndrome was written by Destiny Pacha, Ed.D., who has worked in the public education system for more than 20 years. The story follows Katie and her companions as they...
This week, Acadia Pharmaceuticals announced the initiation of its Phase 3 COMPASS PWS study! This study focuses on evaluating the efficacy and safety of carbetocin nasal spray (ACP-101) for treating hyperphagia in Prader-Willi syndrome. The COMPASS PWS trial is a 12-week, double-blind, randomized, placebo-controlled global Phase 3 trial, with approximately 170 participants aged five to...
Kyle (not his real name) is a delightful, and very social, 9-year-old boy with PWS and related conditions – including hypothyroidism, obstructive sleep apnea, morbid obesity and albinism – who is in need of a loving foster family. He currently resides in a group setting outside of Philadelphia, PA where, with the benefit of structure,...
Prader-Willi syndrome is a spectrum disorder, and the spectrum is broad. Developmental milestones don’t always apply to our loved ones with PWS, not in the typical ways. That certainly does not mean they aren’t developing and learning new skills. It simply means that sometimes, especially for our emotional well-being, we need to toss those “age-appropriate”...
Contributed by Anne Fricke, mom to Freya (living with PWS) What Does Self-Care Look Like for You? For some, self-care is regular massage appointments and weekend getaways. Others sign up for dance classes, spend hours on a golf course, or go out for fancy dinners and nights on the town. These are all great ways...
Food can't be avoided. Yet, with a diagnosis of Prader-Willi syndrome, our relationship to food must shift dramatically. Some may see this as a blessing, an opportunity to learn how to make better food choices. Others may feel the burden instantly. Hopefully, with some adjustments and education, the needed shifts will feel less like a...
Are you planning to make a year-end gift? Giving Tuesday, which falls on November 28th this year, is the perfect opportunity to show your support! Thanks to the generosity of a group of anonymous donors, your Giving Tuesday donation made to PWSA | USA's Angel Drive will be MATCHED dollar for dollar up to $15,000. Make a...
Whether we are prepared or not, PWS eventually demands that we secure the food in our homes. When we implement food security, we help keep our loved one safe. Though food security will ultimately help create relative safety and peace in our lives, planning for it may be a daunting and overwhelming task. But it...
Contributed by Dan Yashinsky Our son Jacob, at age six-and-a-half, said to me once: “Could you get me paper? I’m going to write about superheroes.” Jacob Evan Yashinsky-Zavitz was, himself, as close to a superhero as I’ll ever know. He lived with PWS, and as all the readers of PWSA | USA's Pulse newsletter know,...
Due to the generosity of an anonymous donor’s gift, PWSA | USA is once again able to bring holiday cheer to families in need this holiday season! We will identify a select number of families to receive gift cards to be used to help ease the financial stresses of the holidays. To be considered, please...
As children, we always remember our favorite gifts bestowed at holiday times: a shiny red bike, a beloved doll, a new baseball glove. These gifts and the loved ones who gave them to us are forever etched in our memories now and always. As the holiday season begins and the new year approaches, PWSA | USA is...
We know that many of you want to make a difference in the lives of our PWS Community – and we have the perfect opportunity if you, or one of your family or friends, are a CPA. Below, you will find the full description of and needs that come with this volunteer position. The treasurer...
About Harmony Biosciences Patients at the Heart Grant Via Harmony Biosciences Press Release: Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases, has selected the latest round of nonprofit organizations for its Patients at the Heart and Progress at the Heart...
U.S. Senate Committee Hearing Live Broadcast Link Now Available This Thursday, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26, 2023, our advocates will be present for a press conference on Capitol Hill, hosted by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Representative Mike Gallagher (R-WI),...
On Monday, October 16 & 17, Harmony Biosciences hosted an annual all-employee meeting in Philadelphia, Pennsylvania. Charles Conway Jr. and Jennifer Garzia, PWS parents to Angelica (3) and Rocco (19), were invited to participate in a panel discussion: Delayed, but not Denied: Perspectives on Caregiving. The title and theme of the talk, Delayed, but not...
Contributed by Maria K., mother to George It was a hot, sunny, typical Greek August day when George was born. He, along with his twin sister Nicole came into the world by C-section at 33 weeks. George was quiet, his tiny body floppy, and didn’t make a sound. I remember the alarmed faces in the...
Exciting news for the Prader-Willi syndrome (PWS) community! Newly unveiled data from Harmony Biosciences' phase 2 study reveals promising impacts of pitolisant (Wakix) on PWS patients with excessive daytime sleepiness (EDS). Harmony Biosciences plans to kick off its phase 3 TEMPO study later this year, aiming to dive deeper into the potential of this treatment...
This new website gives in-depth details about Acadia Pharmaceuticals COMPASS PWS Study, including a brief video about the study, eligibility for participation in the study, what to expect at study visits, and a research site locator. Click the button below to enter the website. ABOUT THE COMPASS PWS STUDY: The COMPASS PWS study aims to...
Contributed by Anne Fricke, mom to Freya, living with PWS Freya’s 6th grade class started the year studying volcanoes. Part of the learning experience was to travel to Lassen Volcanic National Park for a 5-day camping trip with arduous hikes and days full of activity. To say I had concerns is an understatement, but she...
Harmony Biosciences has presented new secondary endpoint data concerning the use of pitolisant, an investigational drug, for the treatment of excessive daytime sleepiness (EDS) in Prader-Willi syndrome. According to a recent press release Harmony Biosciences released, the Phase 2 signal-detection study showed improvements in behavioral disturbances, especially in the higher-dose pitolisant group, as well as...
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
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.
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.
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.
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.
