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Sharing Family Stories – Cal

Select a story below to read more about each individual. Samuel John Austin James (A.J.) Theresa Case Daniel Rina Cal   Maria Kefalas: Gentle Warrior During the worst time of her life, Maria Kefalas had a defining moment, when a simple statement from a cherished friend unexpectedly transformed her way of thinking and opened a new world of possibility to Continue Reading...
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I Think My Child Needs In-Home Nursing… Now What?

I Think My Child Needs In-Home Nursing… Now What? By Elisabeth McNulty, Pediatric Family Support Specialist (Bayada) Having  a chronically ill child is hard. Really hard. It affects your entire family, who must adjust to their “new normal.” As a caregiver, your days are consumed with making phone calls, going to doctors’ appointments, managing therapies, giving medicine, advocating, and caring Continue Reading...
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Legislative News

CALL TO ACTION: H.R. 1676 & S. 693 – Palliative Care and Hospice Education and Training Act (PCHETA) PPCC is working with the Patient Quality of Life Coalition (PQLC) to pass the PCHETA bill. The Palliative Care and Hospice Education and Training Act (PCHETA), H.R. 1676 and S. 693 — legislation developed by AAHPM — would expand opportunities for interdisciplinary Continue Reading...
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Advocacy

PPCC Advocacy Statement Pennsylvania Pediatric Palliative Care Coalition (PPCC) wants critically ill children across the Commonwealth to have access to the life-enhancing service of palliative care. This means ensuring that providers across the spectrum are fully connected, with palliative care fully integrated, and that physicians, nurses, home health care aides, and anyone providing services to these children fully understand the Continue Reading...
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Video

PPCC: Who We Are and How We Can Help  This video provides an overview of the Pediatric Palliative Care Coalition (PPCC) of PA and features Executive Director, Betsy Hawley, along with a parent who has benefited from PPCC offerings. (1:17)   PPCC: Pain and Symptom Management  In this in-depth video, Carol May of Children’s Hospital of Pittsburgh of UPMC, presents Continue Reading...
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Q & A

Q: What does “Pediatric Palliative Care” mean? A: Pediatric palliative care, often called “supportive care” is a relatively new concept that has different meanings to different people and institutions. Quality of living and control of pain are generally top priorities. Ideally, it means comprehensive, family-centered, humane care for a seriously ill child and his (her) family from the moment of Continue Reading...
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Terminology

Definitions Glossary/Terminology Acronyms and Terms Used in Pediatric Palliative and Hospice Care Definitions Pediatric Palliative Care (PPC) Developed by Children’s Hospice & Palliative Care Coalition’s Professional Advisory Committee, 2007 World Health Organization Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through Continue Reading...
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Resource Links

For Pennsylvania resources, please visit the PA Resource Map Planning Guides for End-of-Life Choices: Voicing My Choices – Planning guide for adolescents and young adults; Five Wishes Casey Cares Foundation Center to Advance Palliative Care (CAPC) Children’s Hospice International Circle of Life Children’s Center Conversation Project Courageous Parents Network EDMARC Hospice for Children Growth House – End-of-life care resources Hope Grows Continue Reading...
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