When: Tuesday, October 11, 2022 at 8:00 p.m. EST Topic: Rare(ly) Missed Opportunities: Your PWS Financial Guide Join us Tuesday, October 11th at 8:00 p.m. EST to learn about PWSA | USA's newest initiative "Rare(ly) Missed Opportunities: Your PWS Financial Guide." During this free interactive webinar, we will walk you through navigating our newest web-based...
To learn more about sleep issues in individuals living with PWS, PWSA | USA created a six-month program entitled Sleep Issues in Prader-Willi Syndrome: A Deep Dive for Parents & Practitioners, which included monthly focus group discussions led by a trained facilitator. The program will conclude with a full day PWSA | USA Virtual Sleep...
Join PWSA | USA for our July Advocacy in Action webinar: Effective Communication with Elected Officials and Stakeholders - A Virtual Roundtable and Panel Discussion When: July 25, 2022 at 2:00PM EST Register in advance here: https://us02web.zoom.us/webinar/register/WN_W4pZ9Q34R3GoO9HdBpmMbg PWSA | USA is excited to bring you this Virtual Roundtable and Panel Discussion on Effective Communication with...
Just in time for summer, stay hydrated in style with our brand-new Hope United water bottles! The water bottles come in two sizes - 20 oz. or 40 oz. They also come in multiple colors including white, purple, green, orange, red, pink, yellow, and more! BONUS: You have the option to personalize your water bottle!...
The wait is finally over! We are thrilled to reveal PWSA | USA's exciting new initiative, which our team has been hard at work preparing for. CEO Paige Rivard shares insight on our new Peer-to-Peer Fundraising platform, PWS Hope United, in the video below! Please join us next Tuesday, May 31st, for our May Community...
PWSA | USA's 2022 Family Support Campaign begins June 1, 2022 and will last through July 31, 2022 At all ages and stages, PWSA | USA’s Family Support team is always here to offer HELP + HOPE. From your first days in the NICU, to your loved one’s school IEP, food-seeking and behavioral needs, guardianship,...
The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...
Advocacy in Action presents… Engaging with the FDA: Opportunities and Boundaries WHEN: April 27, 2022 at 3:00PM EST REGISTER HERE As our community continues down the ever-evolving road of drug trials to enhance the lives of those who have Prader-Willi syndrome (PWS), PWSA | USA invites you to join us for a live webinar featuring two...
In April 2022, PWSA | USA will host the "Find Your Voice: Advocating for PWS Health Care" webinar series to provide helpful tools and resources on health care advocacy for our PWS community. Because there are very few health care professionals in our communities who have knowledge of the unique health issues of infants, children,...
Help us honor our PWSA | USA volunteers! Do you know someone who deserves to be recognized for their service and dedication to PWSA | USA's mission and the PWS community? 2022 Volunteer Appreciation Award nominations are now being accepted through March 15, 2022. PWSA | USA will give out the following four awards: Advocacy...
Mike “Sarge” Riley, Professional Sports Announcer and Boston Media Personality from 98.5 will host a virtual trivia night fundraiser for the New England Chapter of the Prader Willi Syndrome Association WHEN: Friday March 11 at 7:30 pm (about an hour) WHERE: Online-via Zoom You will receive a zoom link and a reminder before the event....
As we get ready for the 8th Annual Hot Stove Dinner, which will be held on March 26th at the Key Royale Club on Anna Maria Island, Florida AND online for virtual guests, event host Clint Hurdle takes us on a trip down memory lane! Below, Clint shares how he and his wife Karla created...
IPWSO 2022 - Call for Abstracts: Professional Providers and Caregivers - 7 & 8 July 2022, University of Limerick, Ireland. Please spread the word! The IPWSO 2022 Professional Providers and Caregivers Conference is now calling for abstracts for presentations to be submitted for the Conference on 7 and 8 July 2022 at the University of...
Are you planning on making a year-end gift? Giving Tuesday is just one week away and is the perfect opportunity to show your support! Thanks to the generosity of an anonymous donor, your Giving Tuesday donation will be MATCHED dollar for dollar up to $13,000. Make a gift on November 30, 2021 and give twice the good...
We are excited to announce the date for the 8th Annual Clint Hurdle Hot Stove Dinner. Please mark your calendars for March 26, 2022 and save the date to join us on Anna Maria Island or online! Sip, Savor, and Support Prader-Willi Syndrome Association | USA while enjoying the outdoor event on the beautiful grounds...
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PWSA | USA and FPWR will host a combined Community Conversation on Tuesday, November 9th at 8:00 p.m. EST. PWSA | USA CEO Paige Rivard and FPWR Director of Research Programs Theresa Strong will discuss the outcome of the November 4th FDA Advisory Committee Meeting regarding LV-101 carbetocin nasal spray. This will serve as an...
Due to the generosity of our donors, your donation to the Angel Drive will now be matched dollar for dollar up to $60,000. Help us reach our goal of raising $120,000 by December 31, 2021! The 2021 PWSA | USA Angel Drive kicks off TODAY and we are counting on YOU to be our partner...
The 2021 Angel Drive Campaign kicks off November 1st and we're counting on YOU to be our partner in hope! Every year, more than 2,000 individuals and families turn to PWSA | USA to find help when they need it most. Ours is the only organization that provides the comprehensive support, tools, and resources families need...
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When: October 8, 2021 | 11:30 am EST Advocating for treatments for PWS has never been more important! Join this session co-hosted by PWSA | USA and FPWR to learn how you can make the greatest impact with the FDA. It is vital the FDA understand our community’s needs, preferences, and experiences. In this session,...
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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 __________________________________________________________________________________________________________________ ...
FOR IMMEDIATE RELEASE: January 14, 2021 Sarasota, Florida: Prader-Willi Syndrome Association | USA (PWSA | USA) is pleased to announce its upcoming 36th National Convention is moving to an all-new virtual format. Due to the ongoing health concerns brought forth by the COVID-19 pandemic, the organization will provide members of the Prader-Willi syndrome community with a variety...
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.
