GFPD Bereavement Support
The GFPD is committed to supporting and empowering GFPD families at every stage, including the pursuit of a diagnosis, receiving a diagnosis, navigating and managing the diagnosis, and following the death of a loved one with this rare diagnosis. We aim to increase awareness of the profound grief experienced by parents, siblings, and extended family members, as well as offering support to them. Here are some ways through which we support bereaved GFPD families.
This is a private space for bereaved parents and guardians of individuals who had a peroxisomal disorders in the Zellweger spectrum and the related single enzyme protein deficiencies.
- GFPD Bereavement Virtual Events
- These events occur multiple times annually, on different days and times, to ensure maximum accessibility for our global community. They are conducted virtually by trained peer facilitators, with the goal of fostering a supportive environment where participants can openly share their emotions, experiences, and stories, offering each other mutual understanding, comfort, and encouragement. These events are offered to GFPD families free of charge, with registration links distributed via email and our social media channels.
- Extended Family of the GFPD Facebook Group
This is a private space for all grandparents and other adult extended family members of individuals who have peroxisomal disorders in the Zellweger spectrum and the related single enzyme protein deficiencies, including bereaved and non-bereaved families.
The GFPD partnered with Hearts Connected LLC to help families learn about the impacts having a severe and fatal diagnosis can have on family members, and how to help your family cope. During this webinar, a Child Life Specialist shares how to navigate challenging topics, including how to tackle the big questions asked by kids of all ages when a serious diagnosis or death has occurred.
During this webinar, you will hear directly from bereaved parents and professionals while you learn how grief is different for families of children with complex health care needs compared to families of children who aren’t disabled. You will also find out more about the impact of grief on a family, uncover what research tells us about grief, and discover how the grief process is interwoven within the rare disease process, and what a community of support can provide.
Listen to learn more about how you can support siblings of children with complex healthcare needs or a child who will or has experienced the death of their sibling. During the webinar, a Certified Child Life Specialist (CCLS) shares about what a CCLA does and how you can obtain their services. Learn about support for siblings of individuals with complex healthcare needs, at all stages and ages of their experience. This includes appropriate developmental interventions, daily life, hospitalizations, the death of a sibling, memory building, and so much more.
- GFPD Remembrance Ceremony
The GFPD Remembrance Ceremony takes place in-person at the biennial GFPD Family and Scientific Conferences and unites all conference attendees to celebrate the lives of GFPD Warriors that have died.
- GFPD Sensing Connections Hybrid Support Group – Enrollment Currently Closed
In partnership, the GFPD and Zellweger UK provide peer-to-peer grief support for parents of individuals with a peroxisomal disorder. These web-based, peer-to-peer meetings occur 90 minutes per month for 10 months of the year and are led by trained facilitators. The purpose of the group is to provide emotional support, death education, and normalization of the grief process in a shared, supportive community.
Please contact us at bereavement@thegfpd.org with any questions, concerns or to learn more about the ways we provide support to bereaved families.
Grief Support for Families of Children with Deaf-Blindness
The death of a child can be extremely challenging for a family. Finding resources that fit your needs can help in your healing.
The resources listed below offer an array of information and supports to help you on this journey.
The first resources listed relate to supporting children who are grieving. This is followed by a section of resources related to adult grief support.
In addition, a simple way to find services near you is to Google “grief support center in (city and state).
Many thanks to our friends at the National Center on Deaf Blindness for compiling these resources
Eluna (Originally called the Moyer Foundation)
Eluna provides resources and programs to address the critical needs of children experiencing “powerful, overwhelming and often confusing emotions associated with the death of someone close to them.”
In 2002, the Foundation created Camp Erin, which has grown into the largest free bereavement program for children and teens in the U.S. and Canada, with locations serving children in every Major League Baseball city.
The Resource Center (https://elunanetwork.org/resources/) portion of their website is ideal for parents and educators. It allows you to indicate your role and the type of resources you are looking for.
The Dougy Center
The Dougy Center provides support and training locally, nationally, and internationally to individuals and organizations seeking to assist children in grief.
The center does not charge a fee for its services. Visit their grief support programs page: https://www.dougy.org/grief-support-programs to find a program near you
The WARM Place
The WARM Place in Fort Worth, Texas provides peer support groups for children and their families. They also have excellent resources
https://www.thewarmplace.org/resources on how children understand death and process grief, available free-of-charge online.
Articles about Grief and Children
10 Things Grieving Children Want You to Know
A brief article from The Moyer Foundation listing things to keep in mind when helping a child who is grieving
Helping Bereaved Siblings Heal
This article provides information about the emotions experienced by children who have lost a brother or sister and what parents can do to help
Art with Heart
Art with Heart is a nonprofit that helps children and teens overcome trauma through creative expression.
They publish therapeutic art books aimed at kids and teens that can be purchased on their website, offer trainings for service providers,and support partner organizations that run art therapy programs.
The Compassionate Friends
https://www.compassionatefriends.org/
The Compassionate Friends exists to provide friendship, understanding, and hope to those going through the natural grieving process after the death of a child.
The organization has a network of more than 650 chapters with locations in all 50 states as well as Washington DC, Puerto Rico, and Guam. They offer grief support for both parents and siblings.
The MISS Foundation
The MISS Foundation is a volunteer-based organization providing C.A.R.E. (counseling, advocacy, research, and education) services to families experiencing the death of a child.
The foundation has an online support site, face-to-face support groups in some areas, and HOPE Mentors available all over the world.
Their Forums offer an online support group board 24/7, fully moderated for safe space. They have sections for families with specialty information for dads, grandparents, and siblings.
The Center for Loss & Life Transition
https://www.centerforloss.com/
The Center for Loss & Life Transition offers training’s for service providers on bereavement care.
They also have a wealth of resources on their website for people who are grieving or helping others (adults or children) who have experienced a loss.
