Advocacy In Action is excited to welcome our guest presenter for the month of February, Guy Stephens, Founder and Executive Director for the Alliance Against Seclusion and Restraint (ASSR) Join us February 9, 2022 at 8:00 p.m. EST for our next Advocacy in Action webinar, as part of our continuous series to raise awareness and...
January 18, 2022 08:00 ET | Source: Levo Therapeutics, Inc. CHICAGO, Jan. 18, 2022 (GLOBE NEWSWIRE) -- Levo Therapeutics, Inc., a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome (PWS) and related disorders, announced today that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA)...
Following Saniona’s announcement that the company is initiating its Phase 2b clinical trial for Tesomet, which is being studied as a treatment for hyperphagia in Prader-Willi syndrome, the company has launched a website to help advance testing efforts for the drug. If you would like to participate in PWS research for Saniona’s TM006 study, this...
Monday, February 28, 2022 is Rare Disease Day and we are asking YOU, our PWS community, to help shine a light on this important day! There are many ways we can come together even if we don’t do so physically. Being part of a global chain of lights in recognition of Rare Disease Day is...
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PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
We are excited to welcome two new staff members to our PWSA | USA team! Get to know them a little bit more below: Angela Frazier, Events Coordinator Angela has been married for 20 years and lives with her family, including 4 children, in Austin, Texas. Her youngest, Joseph, was diagnosed with PWS when he...
Via Saniona: PRESS RELEASE December 28, 2021 Saniona (OMX: SANION), a clinical-stage biopharmaceutical company focused on rare diseases, today announced the initiation of a Phase 2b clinical trial of Tesomet in patients with Prader-Willi syndrome (PWS). Tesomet is an investigational fixed-dose combination therapy of tesofensine, a triple monoamine reuptake inhibitor, and metoprolol, a beta-1 selective blocker. Data from the...
December 22, 2021 -- With a new year, comes new and exciting opportunities! PWSA | USA has partnered with Let’s Go Fitness, an online fitness community that celebrates diverse abilities, to provide free virtual exercise classes for individuals living with Prader-Willi syndrome. On January 7, 2022, an application will be available for those interested in...
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...
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
December 13, 2021 -- We are very proud and excited for PWSA | USA Board of Directors member Clint Hurdle as he makes a return to the Colorado Rockies baseball team and takes on the role of Assistant to the General Manager. Clint is a longtime supporter of PWSA | USA and has been an...
YOU can help the Chicago School of Professional Psychology learn about the effects of a behavioral caregiver training program for caregivers of children with PWS. Participants will be compensated with a $500 Visa gift card following the completion of the study. Parents with children with multiple diagnoses can reach out to Dr. Bedard for clarification...
Are you a caregiver of at least one child, of any age, who has been diagnosed with Prader-Willi Syndrome? Do you have access to the internet and an internet-connected device? Can you read and write in English? Are you over the age of 18? If you answered YES to these questions, you are invited to...
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 share that the 2021 PWSA | USA Angel Drive Auction is now LIVE, and just in time for the holidays! Browse through our incredible items and place your bids TODAY! Funds from the auction support our 2021 Angel Drive. Together, we can help to make sure all families have the support...
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...
Linda was the oldest, born in 1951 in New York City. Prader-Willi syndrome wasn’t discovered until 1956. My parents noticed Linda would go to the refrigerator often and that she was a bit short for her age. We moved to San Diego in 1961. Linda loved playing tennis, swimming, and eating out. She especially loved...
Peer-Reviewed Publication | UNIVERSITY OF PENNSYLVANIA A research team led by the University of Pennsylvania's J. Nicholas Betley has identified an entirely new way the brain signals fullness after eating. The findings offer a novel target for therapies that could dramatically curb overeating. People with Prader-Willi syndrome, a genetic disorder, have an insatiable appetite. They...
Hello, we are Gabriel and Sarah Hahn. We knew before we married that we desired adoption to be a part of how we built our family. After the birth of our fourth biological child, we entered the world of adoption. Over the last seven years, we have been humbled to have been chosen on three...
After almost ten years of attempting to become parents via fertility treatments, failed foster care adoption committees and even an adoption facilitator scam, we learned about a very special little two-month-old baby boy named Baby M, who had been diagnosed with Prader Willi Syndrome, through Special Angels Adoption Agency. He had been born at Yale...
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...
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The PWSA | USA Advocacy Committee is opening spots for NEW MEMBERS to join. The purpose of the PWSA | USA Advocacy Committee is to advise and educate the PWS Community on public policy issues related to PWS and the rare disease community. In addition, the committee is responsible for providing policy direction in the...
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.
