Bereavement Support
Support, connection, and resources for families navigating the loss of a loved one with Prader-Willi syndrome.
Losing a loved one with Prader-Willi syndrome (PWS) is a deeply personal and life-changing experience. The grief that follows can feel overwhelming, complex, and isolating.
At PWSA | USA, we want you to know that you are not alone.
This page is here to offer support, connection, and guidance during this difficult time. Whether you are looking for someone to talk to, resources to help process your grief, or ways to stay connected to the PWS community, we are here for you.
Bereavement Support from PWSA USA
The PWSA | USA Family Support Team is available to walk alongside you during this time. Whether you need someone to listen, help navigating next steps, or guidance toward additional resources, our team is here with compassion and understanding.
One-on-One Support
Talk privately with a trusted member of our team.
Guidance
Get help navigating next steps after loss.
Family Connections
Connect with others who share similar experiences.
Professional Resources
Referrals to counseling and grief services.
Resources for Navigating Grief
Coping with Grief - Holidays
Navigate the challenges of the holiday season with thoughtful ways to honor your loved one, adjust expectations, and care for your emotional well-being during difficult moments.
Grieving styles
Learn how different grieving styles shape the way individuals experience loss, and gain insight into how to better understand, support, and care for yourself and others.
Healing Hope and Acceptance
Explore the many forms of grief, including anticipatory and disenfranchised grief, and find reassurance that healing, connection, and support are possible through every stage of loss.
Understanding the Types of Grief
Gain a deeper understanding of grief, including anticipatory and disenfranchised loss, and learn gentle steps to process emotions, adjust to change, and begin healing.
What is grief and the journey to healing
Understand what grief is, the emotions and physical responses it can bring, and explore healthy ways to cope with loss while honoring your own unique healing process.
Resources for Navigating Grief
Private Facebook Support Groups
Join a private, moderated Facebook group where families can connect in a safe and supportive space. These groups offer a place to share experiences, ask questions, and find comfort among others who understand the journey of PWS.
24/7 Family Support Line
Support is available whenever you need it. PWSA | USA offers access to a 24-hour support line, providing families with a compassionate voice during moments when guidance, reassurance, or someone to listen is needed most.
Family & Community Connection
Sometimes it helps to talk with someone who has walked a similar path. PWSA | USA can connect you with other families who understand the experience of loss, offering space for shared stories, support, and reflection.
Visit Our Blog
The Importance of Dealing with Grief
Contributed by Kristi Rickenbach I feel so alone.Why am I so sad?What did I do wrong?How…
On Grief
Contributed by Anne Fricke Trauma. Sometimes we don’t notice it in the moment. We are in…
What is Disenfranchised Grief and How Can PWSA | USA Offer Support?
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Grief is the…
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.