At PWSA | USA, we are consistently impressed with how our families show up in support and spread awareness of our rare …
What We Do
Family Support
PWSA | USA's Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS. We also provide education to medical providers, schools, and professional caregivers through ongoing trainings, toolkits and other valuable resources. We support the family from the NICU through all stages of the PWS journey.
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Advocacy & Awareness
Increasing awareness and effectively advocating for Prader-Willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep them informed on the best ways to affect change for their loved ones.
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Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
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Adults with PWS Advisory Board
The Adults with PWS Advisory Board collaborates with PWSA | USA to strengthen support for the adult PWS population.
Who better to guide our mission than those who live it? The Adults with PWS Advisory Board brings firsthand experience and valuable insights, helping PWSA | USA ensure that every voice is heard, every challenge is understood, and every adult with PWS has access to meaningful support.
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ABOUT PWSA | USA
Prader‐Willi Syndrome Association | USA was formed in 1975 to unite parents, professionals, and other interested citizens to enhance the quality of life of those affected by Prader‐Willi syndrome. PWSA | USA empowers the PWS community through shared experiences, research, education, advocacy, and support. With chapters in most states, ours is the only national PWS support organization whose sole purpose is to assist individuals with the syndrome, and their families, every step of the way.
OUR HISTORY
1970s
1980s
1990s
2000s
2010s
2020s
1970s
1975
- – “Prader-Willi Syndrome Parents and Friends,” soon to be renamed “Prader-Willi Syndrome Association,” was established by Gene and Fausta Deterling, parents of a son with PWS, with the support of Dr. Vanja Holm, of the Child Development and Retardation Center in Seattle, Washington
1976
- – Association grows to 140 members, including some from other countries
1977
- – PWSA officially incorporates, with Gene Deterling as first President, and Delfin Beltran as first Chairman of the Board
1978
- – In addition to the newsletter, the Gathered View, PWSA’s first publication, a booklet entitled Prader-Willi Syndrome, A Handbook for Parents, by Shirley Neason (also editor of the GV) was made available
1979
- – The first annual national conference was held in Minneapolis, Minnesota. 165 adults, 15 with PWS, and 15 siblings attended
1980s
1980
- – Marge Wett appointed as first Executive Director, office in her house
- – Delfin Beltran becomes second national President, and Richard Wett becomes second Chairman of the Board
- – National conference at Hyannis Port, Massachusetts
1981
- – Deletion in long arm of chromosome 15 was identified as the cause of many cases of PWS
- – National conference at Boca Raton, Florida
1982
- – National conference at Overland Park, Kansas
1983
- – Deletion in long arm of chromosome 15 was determined to come from the contribution of the father to the chromosome pair
- – National conference at San Diego, California
1984
- – First salaried staff in addition to the Executive Director is hired
- – National conference at Minneapolis, Minnesota. Dr. Andrea Prader himself attended
1985
- – First Scientific Conference held, in conjunction with the annual national conference
- – National conference at Windsor Locks, Connecticut
1986
- – Lota Mitchell becomes third Chairman of the Board
- – National conference at Sacramento, California
1987
- – National conference at Houston, Texas
1988
- – PWSA gets its first official office in Minneapolis, Minnesota. (Until then it had been in the Wetts’ house.)
- – National conference at Louisville, Kentucky
1989
- – C.I.T. (Crisis Intervention and Training) Fund created from National Developmental Center Fund
- – Maternal uniparental disomy, or UPD (meaning both of the 15th chromosome pair came from the mother) was identified, accounting for the cause of most of the non-deletion PWS cases
- – National conference at Calgary, Alberta, Canada
1990s
1990
- – National conference at Salt Lake City, Utah
1991
- – Janalee Tomaseski-Heinemann becomes third national President. “800” line service begins
- – First International Conference held in Holland
- – Deterling Fund (for research) established. C.I.T. Fund renamed in honor of the Wetts
- – National conference at Lincolnwood, Illinois
1992
- – Mission statement formalized. PWSA becomes PWSA(USA)
- – Curt Shacklett becomes fourth Chairman of the Board
- – Terri Schaefer becomes Executive Director
- – National conference at Philadelphia, PA
1993
- – Jim Kane becomes fifth Chairman of the Board
- – National conference at Scottsdale, Arizona
1994
- – National office relocates to St. Louis, MO
- – Russell Myler becomes Executive Director
- – Jerry Park becomes fourth President of PWSA(USA)
- – National conference at Atlanta, Georgia
1995
- – National conference at Seattle, Washington
1996
- – National conference at St. Louis, Missouri
1997
- – National office relocates to Sarasota, Florida. Janalee Heinemann becomes Executive Director
- – National conference at Orlando, Florida
1998
- – Barb Dorn becomes sixth President of PWSA(USA)
- – First major study reported on comparing children with PWS on Growth Hormone with a similar group not treated with Growth Hormone, validating the benefits of such treatment
- – National conference at Columbus, Ohio
1999
- – Ken Smith becomes Chairman of the Board
- – National conference at San Diego, California
2000s
2000
- – By now growth hormone has become a standard treatment for PWS, and FDA approves its use for PWS
- – National conference at Pittsburgh, Pennsylvania
2001
- – Lota Mitchell becomes seventh President of PWSA(USA)
- – National/International conference at St. Paul, Minnesota
- – New Parent Mentoring Program began
2002
- – National conference at Salt Lake City, Utah (first “mini-conference”, providing child care only up through the age of eight)
2003
- – National conference at Orlando, Florida
2004
- – National Conference at Huron, Ohio
- – Carolyn Loker became President of PWSA (USA)
- – Carol Hearn became PWSA (USA) board chairperson
2005
- – 30 year Anniversary of Prader-Willi Syndrome Association (USA)
- – National conference at Orlando, Florida
- – Ken Smith joined Carol Hearn as co-chairs of PWSA (USA)
2006
- – 50 years since Prader-Willi syndrome was first identified
- – National conference on Grand Island, NY
- – Care Providers Advisory Board was established
- – The new Hungry for a Cure logo and tag line were adopted
2007
- – National conference in Dallas, Texas
- – National office moved to 8588 Potter Park Drive, Suite 500, Sarasota, Florida 34238
- – Restructure of board eliminated the need for a president, vice-president for the national organization
- – Carol Hearn, Board Chair, Ken Smith, Vice-chair
- – The Gathered View begins to be sent electronically
2008
- – National conference in Milwaukee, Wisconsin
- – Bylaws were amended to allow for a 15-member board of directors
- – Carol Hearn, Board Chair, Ken Smith, Vice-chair
2009
- – First International Hyperphagia Conference in Baltimore, MD
- – John Heybach, Board Chair, Ken Smith, Vice-chair
2010s
2010
- – John Heybach, Board Chair, Ken Smith, Vice-chair
- – The Webinar program was launched
2011
- – National Conference in Orlando, FL
- – John Heybach, Board Chair, Ken Smith, Vice-chair
- – On The Move national awareness and fundraising campaign begins
2012
- – Second International Hyperphagia Conference in Baton Rouge, LA
- – John Heybach, Board Chair, Ken Smith, Vice-chair
2013
- – National Conference in Orlando, FL
- – Ken Smith appointed Executive Director
- – Michelle Torbert, Board Chair
- – Wyatt Special Education Advocacy Training Program holds its first training session
2014
- – Third International Hyperphagia and Obesity Week Conference in Boston, MA
- – Michelle Torbert, Board Chair, Jim Koerber, Vice-Chair
- – New Website debuts
2015
- – National Conference in Orlando, FL
- – 40 year anniversary of PWSA (USA)
- – Michelle Torbert, Board Chair, Jim Koerber, Vice-Chair
2016
- – Online Wyatt Special Education Advocacy Training released
- – Michelle Torbert, Board Chair, Jim Koerber, Vice-Chair
2017
- – National Convention in Orlando, FL
- – Jim Kane, Board Chair, Tammie Penta, Vice-Chair
2018
- – Steve Queior appointed CEO
- – Jim Kane, Board Chair, Tammie Penta, Vice- Chair
2019
- – National Convention in Orlando, FL
- – Michelle Torbert, Board Chair, Paige Rivard, Vice-Chair
2020s
2020
- – Paige Rivard appointed CEO
- – Michelle Torbert, Board Chair
2021
- – PWSA | USA hosted its first-ever virtual National Convention
- – PWSA | USA’s Advocacy Program is launched in July
2022
- – PWSA | USA hosts first-ever Volunteer Appreciation Summit (April 2022 in Dallas, TX)
- – PWSA | USA implements PWS Hope United peer-to-peer fundraising program in May
- – PWSA | USA hosts first-ever D.C. Fly-In (September 2022 in Washington, D.C.)
- – PWSA | USA hosts first-ever virtual Sleep Summit (September 2022)
2023
- – Stacy Ward, MS, BCBA, appointed CEO
- – PWSA | USA moves to a virtual office
- – PWSA | USA launches Project ECHO health care series, making PWSA | USA the first PWS organization to implement Project ECHO in the United States
- – May 15th officially declared “National PWS Awareness Day”
- – National Conference in Orlando, FL
- – PWSA | USA partners with IPWSO and FPWR to host first-ever FDA Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting in June 2022
- – PWSA Egypt & Middle East organization officially founded in June 2023
- – Aardvark Therapeutics initiatives COMPASS PWS Study for ARD-101 (potential treatment for hyperphagia)
- – PWSA | USA hosts first-ever Moms Retreat (October 2022 in Palm Springs, CA)
2024
- – PWSA | USA hosts 2nd D.C. Fly-In event (May 2024 in Washington D.C.; participation tripled compared to 2022)
- – Popular “Ask Nurse Lynn” series launches in January
- – Amazing display of PWS awareness featured on national scale on PWS Awareness Day (May 115) – Photos of individuals living with PWS featured on two New York Times Square billboards (support by Soleno Therapeutics)
- – Harmony Biosciences initiatives TEMPO PWS Study for pitolisant (potential treatment for excessive daytime sleepiness)
- – PWS Advocacy Coalition is created
- – Soleno Therapeutics files New Drug Application for DCCR with the FDA (July 2022)
- – PWSA | USA launches first-ever PWS-specific Podcast, PWS United
- – PWSA | USA hosts first-ever Residential Providers Conference (August 2022 in Savannah, GA)
2025
- – PWSA | USA celebrates 50th Anniversary
BLOG
Submitted by Emma Niedermeyer, 44, living with PWS Emma is a 44-year-old individual living with PWS in Oregon. She lives in a …
Question: Female, 22 years old, Deletion subtype My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and …
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.
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.
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.
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.
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.
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.