Lighting the way for children with medical complexity
The PPCC LEARN initiative is specific to our pediatric palliative and hospice care community in Pennsylvania with the participation of healthcare providers, medical professionals, therapists, clergy, caregivers and parents.
Legislation Education Advocacy Research Networking
These activities are key to the mission of PPCC, and PPCC will host regular, virtual LEARN events to advance this mission.
PPCC welcomes those interested in advancing the cause of pediatric palliative care in Pennsylvania. To be a part of the LEARN Initiative, contact PPCC Executive Director, Betsy Hawley.
Next LEARN Meeting: May 13 at 4:00PM EST.
Click HERE to register to receive Zoom link.
LEARN dates for 2024:
Feb 12 / May 13 / Sept 9 / Nov 11All LEARN meetings are 4:00-5:00 PM EST.
Thank you to everyone who attended the LEARN Initiative on Monday, February 12th. February’s LEARN Initiative webinar provided an overview of support services across Pennsylvania for patients and families experiencing pregnancy and infant loss. We heard from three different organizations that help families with aspects including grief, community outreach, logistics, memory making, and so much more.
Heather Bradley is the Executive Director of Pittsburgh Bereavement Doulas, which serves people in the greater Pittsburgh area who are experiencing child loss during pregnancy or shortly after birth. Her organization builds relationships with parents during all phases of the pregnancy, birth, and death. All services are free of charge. They offer a wide range of services that varies based on the needs of the parents, whether it be memory making, funeral arrangements, coping, and so much more. Heather and her team help their clients “think of the things they might not have thought of” during this incredibly difficult time, so that they can move into the future without regrets. She encouraged the group to check out their Facebook page to learn about the upcoming training and workshops or get in touch with her directly to inquire about being a photographer.
From SHARE Pregnancy and Infant Loss Support of Lancaster, we welcomed Board Member Dr. Serena Wu and Volunteer Ali Ferrara, LCSW. Dr. Wu described the organization, and gave an overview of what makes SHARE Lancaster unique, like their no-cost burial service due to their partnership with a local funeral home. SHARE also hosts events, like the annual Walk to Remember, now in its 22nd year. Ali gave us an overview of the Love and Support Workshops. These monthly meetings are support groups, but in addition to providing community around loss, they focus on a monthly topic, like coping skills, facing holidays, faith changes, and more.
Finally we heard from Jennifer Kaintz, Executive Director of Emersynn Isla Shining Star Foundation. Jennifer is a bereaved mother of Emersynn, the organization’s namesake and Shining Star. Through her own experience with her daughter, Jennifer learned about the resources available for children with life-limiting illness, like pediatric palliative and hospice service. The organization brings awareness to these services and provides financial assistance to parents. Additionally, they offer compassionate gifts like their Twinkling Totes (care bags for families), Beaming Bucket List Adventures (they will sponsor and help plan a day trip), and are working on developing a peer support group.
Keturah Beiler, BSN, RN, CHPPN, presented on The Clinic for Special Children (CSC), a medical home for children and adults with rare genetic disorders located in Strasburg, PA. She shared an informative overview of the history and culture of the Plain Communities and how CSC uses this information to inform the care they provide. She also spoke about CSC's Cherished Lives program and the ways in which they strive to build bridges between culture and medicine. Keturah provided examples of the ways the CSC team collaborates with other providers caring for patients who are a part of the the Plain Communities in other geographic areas. She also described the specialized in-house laboratory services, including amino acid analysis, real-time molecular diagnostic testing, molecular cytogenetic analysis, next generation sequencing (the Plain Insight Panel™), and exploratory gene mapping that are available through CSC.
Thank you to everyone who attended the LEARN Initiative on Monday afternoon. We had a robust conversation with Heather Valente, MSPA, PA-C, about the use of the POLST and Out of Hospital DNR's with pediatric patients and learned about a new environmental scan aimed at pediatric palliative and hospice care resources in Pennsylvania.
We were delighted to have an engaged and enthusiastic group of pediatric palliative and hospice care collaborators/stakeholders from all over Pennsylvania who are interested in "LEARN"ing together.
During our inaugural meeting on January 23, we had the opportunity to learn more about PPCC, the Initiative and YOUR interest. We received wonderful feedback in our brainstorming breakout sessions, as well as from the follow up survey comments.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
