Thank you to our PWS community for helping us shine a light on Rare Disease Day! This year, the National Organization for Rare Disorders (NORD) focused on encouraging buildings, landmarks, and monuments around the world to participate in a chain of lights to recognize Rare Disease Day. We are excited to share that many buildings/landmarks/monuments...
The information below was provided by the Global PWS Registry --------------------------------------------------------------------------------------- We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth. If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new...
The information below was provided by the Global PWS Registry and approved by the Institutional Review Board (IRB) -------------------------------------------------------------------------------------------- Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and/or surgery for spinal issues....
Thank you to those who shared their rare to help shine a light on Rare Disease Day!
Written by Daniel's Sister _________________________________________________________________________________ My brother, Daniel, was born in 1956, the same year that PWS was formally identified but he was not diagnosed until he was sixteen. Our family, (two parents, Daniel, and his four sisters) moved around a lot — from the U.S. to Chile, France, Canada and Venezuela—eventually settling in the...
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...
As the nation gets ready for Rare Disease Day on February 28, 2022, PWSA | USA CEO Paige Rivard will participate in a national webinar hosted by Harmony Biosciences on Thursday, February 24th at 1pm EST to discuss COVID-19 and Rare Disease Patients. Paige will join U.S. Representative Josh Gottheimer (D-NJ), U.S. Representative Brad Wenstrup...
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....
January Community Conversation: Guardianship Lisa Thornton is not only a parent of a young woman with PWS, but she is an attorney with a lot of experience navigating guardianship and special needs trusts. If, when, and how to apply for guardianship is often a daunting process for parents. Coupled with every state having different processes,...
APPLICATION DEADLINE: Friday, March 4, 2022 Our PWSA | USA Volunteer Summit is a unique opportunity to unite, support, and celebrate PWSA | USA volunteers who share a passion for supporting individuals and families within the PWS community. In addition to celebrating our volunteers, staff and special speakers will share new information, host small group...
When: March 9, 2022 at 8:00 p.m. EST Topic: Navigating and Advocating the Special Education Process for Students with PWS REGISTER IN ADVANCE HERE Advocacy In Action is happy to welcome one of our own as our guest presenter for the month of March: Maureen Tracey, Founder and CEO of Four Seasons Behavioral Solutions As...
Autism BrainNet is a program of the Simons Foundation Autism Research Initiative (SFARI) that promotes innovative, high-quality research on postmortem brain tissue to improve the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions. We work with Autism BrainNet to promote a greater knowledge of neurodevelopmental conditions and brain tissue research,...
Does your loved one struggle with daytime sleepiness? Would you like to learn more about a potential treatment for daytime sleepiness, cognition, and behavior? Join PWSA | USA, FPWR, and Harmony Biosciences Wednesday, February 16th at 3:30 pm ET for a short presentation followed by Q&A to learn more about the Phase 2 study of...
Share Your Heart with PWSA | USA on Valentine's Day Forget the flowers! Cancel the chocolate! Please be OUR Valentine with your gift to PWSA | USA's Hearts of Hope campaign between Tuesday, February 8, 2022 and Sunday, February 20, 2022. By making a donation to the Hearts of Hope campaign, you will have the...
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 spotlight a donor and their story showcasing the...
Harmony Biosciences has released information about their PWS Phase 2 clinical trial where they will be studying "the safety and impact of an investigational medication on excessive daytime sleepiness, cognition, and behavioral function in people with PWS." Harmony Biosciences is currently looking for individuals with PWS between the ages of 6-65 to enroll in this...
Dr. Merlin Butler, who has made a tremendous impact on the PWS community, specifically with his research work studying the genetics of PWS, recently shared a new article with PWSA | USA regarding the JAMA Newborn Screening study. The objective of the study was "to examine the feasibility of newborn screening for these chromosome 15...
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...
January 24, 2021 -- Radius Health, Inc. recently unveiled a detailed fact sheet about its drug RAD011, a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. The fact sheet also gives a description of Radius Health's upcoming SCOUT-015 clinical trial. According to Radius...
January 24 ,2022 -- PWSA| USA is sharing the most recent news released on the status of Soleno Therapeutics' drug DCCR (diazoxide choline) for the treatment of Prader-Willi syndrome. Soleno announced today that it has received the official minutes from a December 2021 meeting with the FDA's Division of Psychiatry. This meeting was a follow...
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...
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.
