The Better Care Better Jobs Act, HR 4131, just obtained more bipartisan support in the US House of Representatives! We first alerted our community to show their support for this piece of legislation less than a week ago. Since then, Representative Hakeem S. Jeffries, [D-NY-8], Representative Veronica Escobar, [D-TX-16], Representative Cori Bush, [D-MO-1] and Representative...
We are excited to share, on World Narcolepsy Day, that PWSA | USA has been selected as one of Harmony Biosciences' 2021 Patients at the Heart recipients to educate the public on sleep effects in PWS.
The orphan drug tax credit is crucial to assist and encourage pharmaceutical companies to develop therapies for rare diseases. Please help us spread the word to lawmakers by clicking on the button below. History An Orphan Drug is a pharmaceutical that is created in order to treat a rare disease. The orphan drug tax credit...
Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion,...
To help our communities better understand Prader-Willi syndrome, how it affects those diagnosed, and what symptoms require immediate medical attention, PWSA | USA has created a customizable PWS Health Identification Card. This Health ID card can be printed and shared with anyone in your community, e.g. school officials, medical providers, family members, etc. Download the...
Compiled and Reviewed by Barb Dorn, RN, BSN, Margaret Burns, RD, Prader-Willi Homes, and Dr. Ann Scheimann, MD What is Gastric Motility and Gastroparesis? GASTRIC MOTILITY is the rate at which the stomach empties. GASTROPARESIS is slow emptying of the stomach. This condition occurs when there is a delay or slowing in the contraction of...
Founded in 2017 by Jessica Patay, mother to a 18-year-old son with Prader-Willi syndrome, We Are Brave Together (WABT) is a nonprofit organization whose mission is to support caregiving mothers to children, any age, with any diagnosis, disability, or challenge, including learning differences, ADHD, and mental health issues. This international community includes over 1350 moms...
Make your voice heard…STAT! The EveryLife Foundation for Rare Diseases is seeking advocates to share quotes, photos, and/or videos to express their support the Speeding Therapy Access Today Act, or STAT Act. Advocates are encouraged to share how their specific rare disease journey will be positively impacted by a specific aspect of the STAT Act. Please...
We are excited to offer a special webinar Thursday, August 26, 2021 at 8:00 p.m. EST on becoming an advocate for PWSA | USA. Advocacy is not just for lobbyists: Anybody can be an effective advocate. Join PWSA | USA and learn how you can help bring PWS awareness to states throughout the country. At...
The BENEFIT Act, HR 4472 / S373, has obtained more bi-partisan support in the US House of Representatives! Representative Doug LaMalfa (R-CA) has signed on to show his continued support for the rare disease community. The BENEFIT Act is a bi-partisan piece of legislation that would require that the FDA disclose whether and how patient...
The BENEFIT Act, HR 4472 / S373, has received a bill number in the US House of Representatives! Representative Doris Matsui (D-CA) introduced the BENEFIT Act mid-July, but with a bill number it’s now easier than ever to ask your elected officials to sign on and support this life-changing piece of legislation. The BENEFIT Act...
August is Gastroparesis Awareness Month. Gastroparesis, also known as delayed gastric emptying, is a chronic condition that affects the stomach muscles and prevents proper movement of food from the stomach to the small intestine.Nearly every person with PWS has some degree of slow gastric emptying. This month, in honor of gastroparesis awareness, we are asking...
The STAT Act, HR 1730, just obtained more bi-partisan support in the US House of Representatives. Representative David Kustoff (R-TN) and Representative Josh Gottheimer, (D-NJ) have joined forces with 19 other US representatives to show their continued support for the rare disease community. The STAT Act will allow patients with a rare disease speedy access...
We are excited to offer a special webinar Monday, August 9, 2021 at 7:30 p.m. EST on homeschooling and PWS. The COVID-19 pandemic forced parents to make difficult decisions regarding their children’s education. Join Julie Casey and Danielle Warmuth to learn from veteran homeschoolers about curriculums, services, and socialization. REGISTER IN ADVANCE HERE __________________________________________________________________________________________________________________ ...
If you are interested in spreading awareness of PWS, engaging elected officials, and traveling with fellow PWSA | USA supporters, YOUR time has come! PWSA | USA is looking for volunteers from each state to participate in launching a special project to promote PWS awareness throughout the United States. For more information, please contact Dorothea...
On June 17, 2021, representatives from PWSA | USA, FPWR and experts in the field of Prader-Willi syndrome research met with the FDA’s Center for Drug Evaluation and Research to discuss issues related to PWS clinical trials. The purpose of this meeting was to promote dialogue between PWSA | USA, FPWR and members of the...
This has been an incredible week for PWSA | USA and the rare disease community. In collaboration with RDLA and the Every Life Foundation, PWSA | USA took part in Rare Disease Week on Capitol Hill. We had the opportunity to represent our community and meet with Congressmen Tonko, Delgado, Bacon, and Senators Schumar, Gillibrand,...
As told by her mom Lauren When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation. PWSA | USA sent us a packet of information...
As told by her mom, Jennifer The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we...
Rare Disease Week will take place July 14, 2021 – July 22, 2021 and it’s a chance to make your voice heard! EveryLife Foundation will be leading Rare Disease Week, which educates those of the rare disease community on federal legislative issues, meet other advocates, and share their unique stories with legislators. If you are...
Teacher Appreciation Week Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you? I know I would not be. I considered being a teacher – who does not love the idea of getting out of work by three every day and having summers off? What...
Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many...
The leadership in an organization is one of the most important elements to achieving long-lasting success. It is important for this individual to be passionate, knowledgeable and organized. They must be a team builder as well as build and maintain alliances. They must be vigilant in making sure there are the proper resources to maintain...
You may not know Gene and Fausta Deterling, but they changed your life and the life of your child with PWS. “Curtis has Prader-Willi syndrome.” The Deterlings stared at their doctor in disbelief when they heard those words in 1971. Gene was an engineer and a manager, a problem solver. “Can’t we do something?” That...
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.
