Pediatric Palliative Care Coalition

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Pediatric Palliative Care Coalition

Working together for children with medical complexity
http://www.ppcc-pa.org/

08/04/2026

Register today for the August 20th PPC Webinar - Improving Pediatric End of Life Legacy Building at Home.

In this webinar, the presenter will discuss the implementation of legacy interventions for families to do at home. These Memory Making kits, aimed to independently facilitate legacy activities at home, allow for the creation of tangible keepsakes while also creating intangible meaning-making in the process.

08/01/2026

In our latest edition of House Happenings, our CEO Shekinah Eliassen reflects on USA TODAY’s recent visit to George Mark Children’s House and the national spotlight it brings to pediatric palliative and respite care.

Her message honors the families who shared their stories, the care teams who make extraordinary moments possible, and the growing movement to ensure that every family facing a life-limiting illness can access compassionate, family-centered care.

We invite you to read Shekinah’s message and help carry this work forward: by volunteering, donating, advocating, or simply sharing our story. Every action helps strengthen George Mark Children’s House while building greater awareness and support for children and families everywhere.

Read our latest blog: georgemark.org/a-national-spotlight-on-george-mark-childrens-house/

Learn how you can help: georgemark.org/get-involved

06/29/2026

Children with complex medical needs belong at home with their families - not in hospitals or institutions.

TribLive recently published a letter to the editor by Mary Hartley, Achieva's senior vice president and president of The Arc of Greater Pittsburgh, highlighting the urgent need to address Pennsylvania's pediatric home nursing crisis.

Achieva supports the Families Providing Extraordinary Care Act (House Bill 1068), which would allow family members to be compensated for providing the skilled medical care their children need when nurses aren't available. Any alternative legislation must include all children with complex medical needs, especially those with tracheostomies and ventilators. These families are highly trained - often teaching nurses the specialized care their child requires.

Passing HB 1068 would help keep families together, reduce unnecessary institutionalization, and make responsible use of taxpayer dollars by supporting care at home rather than in more costly institutional settings.

Read Mary's letter to learn why this legislation matters for children, families, and Pennsylvania: https://community.triblive.com/news/4082590

06/17/2026

Attention friends across Pennsylvania!

We are holding our next LEARN Initiative meeting on Wednesday, June 24th at Noon. The LEARN Initiative brings together Pennsylvania stakeholders dedicated to improving care for children with serious illness and those receiving palliative, end-of-life, and hospice services.

We will be joined by Jennifer Harniman-Crangle, LSW, of The Advocacy Alliance; Jordan Hunt and Kendra Pope, partners on our *NEW* Family Support Toolkit; and Jacquelyn Horstmann Didio, Co-Founder & CEO of Madelyn James.

You can register at https://us02web.zoom.us/meeting/register/EJZLzAkZSwWimmAwx1sHKA

Hope to see you there!

06/12/2026

Register today for the June 16th PPC Webinar - Anti-Racism and Health Equity in Pediatric Serious Illness: Next Steps in Maintaining Commitment.

In this webinar, presenters will discuss ways that health inequalities impact children facing serious illness and what clinicians can do to help address these inequalities.

Literature and narrative medicine will be used to highlight experiences of historically marginalized patients to empower attendees to serve as advocates for patients of various backgrounds and lived experiences.

05/12/2026

We hope you will join us TOMORROW, March 13, 2026 at Noon EST for our PPCC Firefly Chat -Honoring Grief, Supporting Caregivers: Life After the Death of a Child with Medical Complexity.

During this Chat, two bereaved mothers and a bereavement social worker will highlight what grief can look like and how the grief and bereavement process can be addressed with a greater sense of understanding and compassion.

Firefly Chats are FREE, but registration is required.

https://us02web.zoom.us/webinar/register/WN_tzFRAxnKSPuI6qRn4SON2A #/registration

04/23/2026

Your experience matters—and it can help improve care for children and families across Southwestern Pennsylvania.

PPCC is seeking to connect virtually with mothers, grandmothers, sisters, aunts, and other female caregivers in Southwestern PA caring for children with medical complexity who currently use pediatric supportive, palliative, or hospice care or qualify for these services.

The information gathered supports further development of pediatric supportive, palliative, and hospice care programs for children and their families in southwestern Pennsylvania communities, as well as to enhance PPCC’s advocacy efforts throughout the state.

Learn more at https://redcap.lehigh.edu/surveys/?s=7ECJTNKC739EJXET

Please share with anyone who may be interested!

04/14/2026

Register today for the April 23rd PPC Webinar - Adolescent Palliative Care: Who Decides?

In this webinar, Dr. Macauley discuss tools for supporting and working with adolescent patients facing serious illness. This presentation will help clinicians understand the unique aspects of adolescence so that this group can receive optimal care and attention.

https://mailchi.mp/ppcc-pa/april-2026-ppc-webinar-5864508

03/03/2026

Register today for the March 2026 PPC Webinar on March 17, 2026 - The Calm and the Storm: Hypothermic Dysautonomia Througha Palliative Care Lens.

In this webinar, Dr. Vallely will review the pathophysiology of "cold" storming in children with SNI using case studies. He will also discuss dynamic goals assessment for this problem and describe how partnership with a child’s community can inform management.

https://mailchi.mp/ppcc-pa/march-2026-ppc-webinar

02/24/2026

🆕 Pediatric e-Journal Issue #82 | Trauma and Trauma-Informed Care
The latest edition of the Pediatric e-Journal is available now! The focus of this issue is trauma and trauma-informed care, specifically as they involve patients and family members.

The eJournal is available to everyone and can be downloaded from the Alliance website: https://allianceforcareathome.org/pediatric-care/pediatric-e-journal/

This e-Journal is produced by the Pediatric e-Journal Workgroup and is a program of the National Alliance for Care at Home. Archived issues of this publication are also available on the Alliance website.

Address

Pittsburgh, PA

Telephone

+14129638243

Website

http://www.ppcc-pa.org/

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