Family Resources

Family Advisory Council (FAC)

FAC Chairman: Jim Santucci

Mission: The CHPCC Family Advisory Council provides essential parental perspective to improve healthcare systems that serve medically fragile children.

The FAC is a group of parents and family members, both caregiving and bereaved, who work with CHPCC in affecting systemic change and improving systems of care in pediatric palliative care.  The FAC embraces the philosophy that parents are indeed the “experts” in the care of children.  CHPCC maintains a policy of solidarity and inclusiveness – parents’ insights remain integral to shaping our core programs and advocacy efforts.

Members of the FAC bring a compelling and powerfully realistic voice to the value of palliative care and hospice support for children.  By sharing their stories and experiences with others, FAC members shed light on the intimate, complex, and volatile journey that often encompasses a child’s life-threatening diagnosis.  Their work with CHPCC and with our collaborative partners helps to compassionately bridge the chasm that exists between families and healthcare providers, and guides CHPCC’s efforts to improve care for children.

Activities include parent panels at CA state and national conferences; participation in the development and implementation of policy initiatives and program materials; and serving as ambassadors to the community-at-large.

If you would like more information about FAC activities, contact Jennifer Ramirez at jennifer@chpcc.org.

Partnership for Parents

Partnership for Parents (www.partnershipforparents.net and www.padrescompadres.org) is a bilingual online source of support and information for parents of children with life-threatening illnesses and grieving parents. All of the materials are available in English and Spanish.

The site offers useful information for all stages of the journey from initial diagnosis to, if necessary, grief support.  CHPCC partnered with parents, doctors, social workers, and chaplains to create an online safety net of information and support which is easy to read and user-friendly.  It covers topics such as Talking to Your Child’s Doctor, Making Sense of Medical Information and Terms, Your Child’s Pain, Getting the Help You Really Need, Preparing for a Crisis, and Coping with Grief.

Family Stories

Families share their joys and challenges of everyday life loving, living with, and caring for a child with a life-threatening illness.

Visit the Family Stories category of our blog.

Teen Perspectives

Young adults open up about what it’s like to be young and living with a serious illness.

Visit the Teen Perspectives category of our blog.

Resources

For a full listing of resources visit our resources page.