Contributed by PWSA | USA Community Engagement Coordinator Dorothea Lantz
If there is one word to describe the events of PWSA | USA’s first ever Volunteer Summit in Dallas, it would be magical. We had more than 30 of our dedicated volunteers in attendance for a Saturday filled with hope and ideas on how to keep making life better for our families battling PWS.
The agenda included three incredible speakers:
Rachel Radomski, Senior Director of Patient Advocacy for Harmony Biosciences (Harmony Biosciences | Patients Are At The Heart Of Everything We Do)
Jennifer Pastiloff (Jennifer Pastiloff), a bestselling author, public speaker, and Aunt to a child with PWS
Mark Dant, the Board Chair of the EveryLife Foundation (EveryLife Foundation for Rare Diseases) and father to Ryan Dant and who also was instrumental in developing a therapy which saved the life of his son Ryan and many others battling Mucopolysaccharide (MPS-1) disease
We explored new and innovative ways to connect with PWS families and are in the process of launching several of those ideas over the coming weeks, including:
- A new PWSA | USA text message campaign,
- video tutorials to help families navigate all of the information on our website,
- listing PWSA | USA volunteer opportunities and time commitments, and
- continuing to streamline the Pulse (our bi-monthly newsletter) and other communication methods.
We also presented four awards to individuals who have gone above and beyond in assisting with our advocacy and awareness, family support, and research efforts!
Advocacy & Awareness Volunteer Award | Presented to Jennifer Garzia
Family Support Volunteer Award | Presented to Elaine Towle
Research Volunteer Award | Presented to Joe Gill
Volunteer of the Year Award | Presented to Melissa Rivas
Stay tuned for more! We laughed, we cried, we were inspired! Thank you to all our attendees and to ALL our volunteers. PWSA | USA cannot do what we do without the support of all of you and we remain forever grateful!
If you are interested in becoming a PWSA | USA volunteer, please fill out our volunteer form by clicking here or by emailing volunteer@pwsausa.org.
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.