Our Mission
To protect and promote the best interests of all persons affected by Prader-Willi Syndrome. To act as a vehicle of communication on Prader-Willi Syndrome related matters and to publish such materials to all members of the organization. To promote the establishment and improvement of facilities and the management of such facilities for the treatment, study, education, shelter, recreation, recuperation and other general benefit to persons affected by Prader- Willi syndrome and to act as a focus for scientific, educational and charitable activities related to the syndrome.
Our Functions
Prader-Willi Syndrome Arizona Association (PWSAA) is an Arizona 501©3 organization whose board of directors are all volunteers. PWSAA is recognized by Prader-Willi Syndrome Association | USA (PWSA | USA) as a full state chapter in good standing. PWSAA was organized in 1992 by a group of parents who wanted to network, assist and educate other parents and professionals with PWS. During those early years, growth hormone was yet to be recognized as a treatment for PWS and quality of life for those affected by PWS was dismal. Over the last 23 years there have been great strides made with PWS early diagnosis. Growth Hormone, other medical treatment and clinical studies have improved the life span and quality of life for our children and clients. This generation of families with PWS has new found HOPE for the future of their families.
PWSAA. along with PWSA | USA. work together to support families, professionals and educators with any PWS related issue or concern. PWSAA diligently works to identify families who have received a PWS diagnosis, immediately answer any crisis call and to offer support to any family or professional.
Some of those services are the following:
- Network with Arizona families and provide a parent mentor who has a child in the same age group
- Provide Crisis support at the state level
- Refer to a crisis counselor at PWSA | USA if needed
- Provide IEP support for families and state representation if needed, including being present or through phone conference
- Coordinate with PWSA | USA to have educational professionals assist if mediation is required or a law suit is filed
- Provide education or training to medical or support professionals
- Provide assistance with law enforcement incidents involving a person with PWS
- Provide training for families, educators and professionals on PWS
- Organize awareness events, fundraisers and family days
Contact Information
PWS Arizona Association
Facebook
pwsaarizona@gmail.com (Email is the best way to reach us!)
https://www.pwsaarizona.org/
PO Box 42683
Tucson, AZ 85719
Board members:
President: Crissy McGann (mom to Amalia, age 4)
Vice President: Allyson Jeans (mom to Sienna, age 9)
Treasurer: Tammie Penta (mom to Victor, age 31)
Secretary: Lisa Lamb (mom to Makenna, age 13)
Member-at-Large: Cindy Smolk-Moscoso (mom to Sebastian, aged 17)
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.
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.
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.
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.