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Resources

Local Resources

The Kara Fund

The Kara FundThe Kara Fund strives to enhance the quality of life of children with life-threatening diseases, and their families, by providing material items, goods and services that offer physical and emotional support for them in their time of distress. We will advocate for pediatric patients and palliative care initiatives where possible and appropriate.

The Kara Fund supports local patient families through The Pillar Project, NICU Program for Overnighters, Comfort Care Program, Home Care Program, and Family Care Program.

CompassionNet

CompassionNet is a community-based pediatric and perinatal palliative care program sponsored by the Lifetime Healthcare Companies, including Excellus BlueCross BlueShield and Univera Healthcare. YourCare Health Plan is also a sponsor. We provide support to families caring for a child with a potentially life-threatening illness as well as families expecting the birth of a child with a serious medical condition. Starting at the time of diagnosis, our interdisciplinary team collaborates with other providers to address children and families’ physical, emotional, social, and spiritual needs and improve quality of life.

Always Love

Always Love is a nonprofit organization founded by Jennifer Phillips of Root and Wander Photography, which gives parents photos to remember their children by.

Perinatal and Infant Bereavement Resources of Central New York

No Bereaved Parent Should Stand Alone. Perinatal and Infant Bereavement Resources of Central New York is committed to a standard of optimal bereavement care for the Central New York region. We work towards this goal through resource sharing, education, and community programs for bereaved families.

Hospice of Central New York and of the Finger Lakes

Camp Healing Hearts

Camp Healing Hearts is a day camp for children who have experienced the death of a loved one or special person. Age appropriate groups provide an opportunity for children to interact with peers also dealing with grief.

The Grief Center

Our professional staff provides counseling support for children, teens and the adult who are trying to help. Our young children’s room is set up with puppets, doll houses, art supplies, board games, books, puzzles and more to help children express and learn to cope with their feelings of grief. Call us at 315-634-1100 to schedule an appointment.

https://www.hospicecny.org/


Online Resources

Courageous Parents Network

CPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment

The Compassionate Friends: Supporting Family After a Child Dies

Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family. The Compassionate Friends website includes several links to other relevant and supportive resources and organizations. 

What’s Your Grief?

What’s Your Grief offers several supportive resources for families experiencing grief. 

The Dougy Center

The Dougy Center offers supportive resources for children, teens, young adults, and their families grieving a death can share their experiences. They provide support and training locally, nationally, and internationally to individuals and organizations seeking to assist children in grief. They are currently providing resources on coping during COVID-19. 

National Alliance for Grieving Children (NAGC)

NAGC is a nonprofit organization that raises awareness about the needs of children and teens who are grieving a death and provides education and resources for anyone who supports them. 

Resolve Through Sharing

Resolve Through Sharing offers grief support materials and industry-leading comprehensive perinatal, neonatal, pediatric, and adult death bereavement training to healthcare professionals globally.

National Child Traumatic Stress Network (NCTSN)

The mission of National Child Traumatic Stress Network is to raise the standard of care and improve access to services for traumatized children, their families and communities. The website includes updated resources on racial injustice and trauma related to COVID-19. 

Centering Corporation

Centering Corporation is a non-profit organization dedicated to providing education and resources for the bereaved of all ages.

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