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D.C. Fly-In 2024

PWSA | USA is excited to announce that our 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During the Fly-In, we will learn about Policy affecting the PWS community, hear from policy makers, and continue our advocacy efforts by coming together on May 15th for a “Day on the Hill” to celebrate National PWS Awareness Day! We want to thank Aardvark Therapeutics, Acadia Pharmaceuticals, Harmony Biosciences, and Soleno Therapeutics for funding this important event for our community.

Important D.C. Fly-In Update

We have reached our capacity for 2024 D.C. Fly-In applications. We are thrilled to see the overwhelming interest in this event and look forward to taking our advocacy efforts to Washington, D.C. in May! Attendee selections have been made on a first-come, first-served basis. Thank you all for your incredible enthusiasm and understanding.

If you have any questions, please reach out to us at advocacy@pwsausa.org.

D.C. Fly-In Grant Funding Provided By

2024 D.C. Fly-In Hill Day Asks

2024 D.C. Fly-In Agenda

2024 D.C. Fly-In FAQs

Who can attend the D.C. Fly-In?

If you live in the United States and need or receive services for PWS, you should join.

What will our "asks" be to policymakers?

We will have three specific "asks" for elected officials and their staffers when we attend the Congressional meetings on May 15th. We will ask elected officials to sign on to and support the following initiatives: Promising Pathway Act (PPA) 2.0, Peer Reviewed Medical Research Program (PRMRP), and a Congressional Letter of Support for PWS to the U.S. Food and Drug Administration. Scroll above to find more details about these three asks.

What am I responsible for paying for?

Everyone who attends the D.C. Fly-In is responsible for purchasing their own plane ticket(s) and scheduling their flight(s). PWSA | USA will cover our attendees' rooms at the YOTEL Washington DC for three nights (May 13-15), However, if you choose to have your own room (no roommate) or need a room to yourself because you are bringing additional family members, you will be required to pay a $150 per night surcharge. After your application is submitted, PWSA | USA will reach out with next steps.

Jennifer Bolander

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

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 Farrar

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.

In addition to Evan’s work with parents, he helped create PWSA (USA)’s Wyatt Special Education Advocacy Training (WSEAT) in 2013, the PWSA (USA) Special Education Advisory Board (SEAB) and created PWSA (USA)’s e-letter “School Times”. Evan’s special education advocacy training includes graduating from the William and Mary College of Law’s Special Education Advocacy Institute and regularly attending the annual Special Education Law Symposium at Lehigh University. Evan has an M.A. in Mental Health Counseling.

Dr. Amy McTighe

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

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.

Jim Comstock-Galagan Esq.

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.