Contributed by Karin Sweeney As a military family we introduced Klara (14 with PWS) to running very early on, seeing as her active-duty dad had to run almost every day for 21 years. She hopped and skipped her way through a color 5k race for the first time at 5 years old, but her true...
Managing daily life can bring challenges for families and individuals affected by Prader-Willi syndrome (PWS), but when a crisis strikes, having someone to lean on who truly understands can make all the difference. PWSA | USA’s medical and family support services offer a vital safety net, guiding families through moments that feel overwhelming and providing...
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 Jeremy Lanning My name is Jeremy Lanning, and my son, Lucas Warren Lanning, was born on 05/23/2023. He was born with Prader-Willi Syndrome. My wife Melissa and I have been married for 12 years, and our other son, James, is six. I have three children from my previous marriage. I am 49 years...
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...
contributed by Kristin McKinney My daughter, Mira, is 12 years old and in our local middle school in Colorado. She got a perfect score on a written spelling bee test at her school that allowed her to qualify to participate at the district level. She was only 1 out of 3 students in the whole...
For Rare Disease Day 2024, PWS mom and PWSA | USA staff member Melanie McDonald wanted to take the opportunity to raise awareness right in her community of Jaffrey, New Hampshire. Melanie’s children, Henry (12) and Josephine (5 w/ PWS), love their town library and saw it as a great place for families to gather...
PWSA | USA Spotlight on Hope contributed by Kristi Rickenbach, Mom to Justice Justice, 20 living with PWS, has been a member of the Young Adult Rare Representative (YARR) since January 2023 and recently had the opportunity to learn more about one of the things she is passionate about, Advocacy.The EveryLife Foundation offers a YARR...
Contributed by Jennifer Lloyd When it comes to finding people who understand PWS, it can feel isolating – especially after a new diagnosis. Silas and Nora met at Physical Therapy at a few months old. I remember his PT telling me there was a little girl with PWS that was going there and I knew...
PWSA | USA Spotlight on Hope, Contributed by Michele Hampton, Mom to Jayda (living with PWS) Jayda was born right on time weighing in at 5lbs 12oz. We were initially told she was “slow to start” and just may take some time to adjust. But, as I am sure all of us understand, she was...
“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...
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,...
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...
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...
PWS sibling Austin, 14, has been using his new entrepreneurial skills to raise money for PWSA | USA and awareness for our rare disease community in honor of his sister Lola. How? By making and selling jam! Read below to find out how Austin came up with this idea, how much he has raised so...
Lindsay Baker, 31, who is living with Prader-Willi syndrome, made a splash at the 2022 Special Olympic Games in Orlando, FL by competing in and medaling in not one, but TWO swimming events! PWSA | USA had the opportunity to speak with Lindsay's mom, Delores, who shared her daughter's incredible journey from birth and her...
We are starting a new initiative to inspire HOPE for our PWS community! Spotlight on Hope will share stories about individuals living with PWS: stories about a recent triumph, big or small, overcoming a challenge, being recognized in their community, or anything that inspires hope or joy in their life and those around them. If...
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Prader-Willi syndrome was first diagnosed in 1956; only 63 years ago. With supportive living and specialized care, we are now seeing individuals with PWS living longer and healthier lives. Susan Booth (Boothie) is one of those people. Susan was born March 18,...
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.
