April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...
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...
On Thursday, March 17th, the House Energy & Commerce Subcommittee on Health held a hearing regarding The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight. This hearing explored a number of legislative proposals intended to accelerate innovation of therapies, while ensuring appropriate levels of oversight, including H.R. 1730, the Speeding Therapy Access Today...
URGENT CALL TO ACTION!! Due to the tremendous momentum created by Rare Disease Week on Capitol Hill, The Speeding Therapy Access Today (STAT) Act will FINALLY be discussed in a Congressional hearing on Thursday, March 17th at 10:30AM EST! This is a MAJOR milestone across all rare disease communities' efforts to pass targeted and impactful...
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,...
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...
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,...
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...
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...
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...
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...
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...
On Thursday, November 4, 2021 from 8:45 a.m. to 3:30 p.m. EST, the U.S. Food and Drug Administration (FDA) will hold an Advisory Committee Meeting to discuss the new drug application (NDA) 214812, for carbetocin nasal spray, submitted by Levo Therapeutics, Inc., for the proposed treatment of hyperphagia, anxiety, and distress behaviors associated with Prader-Willi...
Update: Deadline for signatures EXTENDED to close of business Monday, October 25, 2021 Rep. Gottheimer of New Jersey has drafted and is gathering signatures for a letter to House leadership urging them to oppose the harmful changes to the Orphan Drug Tax Credit. Please consider taking action by clicking the button below. Thank you for...
Read PWSA | USA Clinical Advisory Board's full Consensus Statement Here. Wednesday, October 20th is recognized as World Osteoporosis Day. Osteoporosis is a condition that commonly impacts individuals living with Prader-Willi syndrome, and is typically diagnosed in adolescence and adulthood. The cause(s) of the osteoporosis is not totally clear, but it is thought to be...
Would you like to be part of our community-wide effort to advocate for new treatments for PWS? The FDA is now accepting comments from the public regarding a new drug application currently under review for LV-101 (intranasal carbetocin), a potential treatment for PWS. Comments submitted by October 21, 2021, will be reviewed by the FDA...
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,...
October is nationally recognized as Physical Therapy Month. We want to thank the Physical Therapists who help our PWS community and provide care for our loved ones. PTs help address physical, mental, and behavioral challenges while working with those living with PWS. They help each PWS individual reach their greatest potential. Early on, physical therapists...
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.
