International 15q Day If you’ve been in the Prader-Willi syndrome (PWS) community for a while, then you likely know that PWS is a rare genetic disorder caused by an abnormality with the 15th chromosome. International 15q Day is a day to bring awareness to PWS along with two other syndromes caused by abnormalities in the...
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,...
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...
The NIH-BRAIN Initiative (Brain Research Through Advancing Innovative Neurotechnologies – Initiative), is a partnership between the National Institutes of Health (NIH) and nonfederal funding sources to advance innovative neurotechnologies to revolutionize the understanding of the brain/neurocircuitry. Since its inception in 2013, this program has had important impacts on our understanding of normal brain function this...
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...
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...
February 29th, Rare Disease Day, is just around the corner! PWSA | USA and PWS advocates will be meeting in Washington, D.C. to make their voices heard at Rare Disease Week. To date, there are over 10,000 rare diseases, 95% of which are without FDA approved treatments. 70% of genetic rare diseases start in childhood...
We reached out to our PWS community of parents and caregivers to ask, “What is your PWS Parenting Hack?” Our goal was to gather tips and tools that help parents and caregivers navigate the challenges of PWS. What may seem like a simple tip from one parent could be life changing for another. So, please...
Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be covering. This year’s event hotel...
We can continue to make our voices and our stories heard through advocacy and community outreach. On January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable...
We are excited to announce the launch of PWSA | USA’s brand new initiative – The Rare Aware Art Share! This virtual art show aims to spotlight the voices of individuals with Prader-Willi syndrome. We hope to learn more about each individual, their lives, and their experiences as someone with PWS. Our hope is that...
by Katherine Crawford, former PWCF Family Support Coordinator; Updated by Lisa Graziano, M.A., PWCF Education and Training Consultant Holidays are a time for gathering, connecting, and celebrating – but are also typically centered on food, which often places enormous stressors on families of a child or adult with PWS. We hope the following tips make your...
On December 6, 2023, Director of Community Engagement Dorothea Lantz was the keynote and opening speaker for the first annual Rare Conversations. This rare disease policy forum was organized by Alexion AstraZeneca Rare Disease and focused on how to advance the needs of people living with rare disease and their caregivers by working with state...
Contributed by Kim Tula PWSA | USA supports the PWS community in a multitude of ways. This includes providing training to residential home and school staff. These trainings are an essential component of educating schools, homes, and providers to help our loved ones live safer, healthier lives. Kim Tula is our Alterman Family Support Counselor....
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....
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...
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,...
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 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...
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.
