provide resources for, and to advocate for, medical professionals, volunteers and
families caring for children with life-limiting illnesses,
and to ensure the availability of compassionate,
comprehensive care across the State of Michigan.
The Coalition was formed in the summer of 2016 by the leading
children's hospitals and hospices of Michigan.
Full membership is open to professionals and institutions involved
in pediatric palliative service to share their experience, access
the expertise of others, help advance availability of care across
the state, and to speak and advocate with a common voice to
legislators, and government and commercial payers.
Associate membership is open to all other individuals and
institutions in Michigan indirectly involved or otherwise interested
in pediatric palliative care.
Kenneth Pituch, MD*
Jane Turner, MD* Jeanne Lewandowski,
MD Nadia Tremonti, MD
Teri Turner, RN* Bradd Hemker, MD*
Abigail Waller, LMSW*
John Person, JD*
(Board Members are noted with an asterisk)
Representatives from the well-established
coalitions of other Midwest states were invited to the Art for
Charlie Conference in East Lansing, MI, in November, 2015. Following
the conference a Work Group of interested attendees was formed to
explore establishing a coalition for pediatric palliative care for
Michigan, similar to those of the other states.
The Work Group became the Steering Committee
for the Coalition which was established as a Michigan nonprofit
corporation. The Committee adopted and adapted the Guiding
Principles of the now defunct MAPPS (Michigan Alliance for Pediatric
Palliative Care Services) which had been a forerunner of the
The Art for Charlie Foundation undertook to
fund the startup of the new coalition, handled its incorporation as
a Michigan nonprofit and filed for 501(c) status with the IRS.
The members of the Steering Committee became the
corporation's initial Executive Committee appointing the three
directors required under Michigan law for the formation of a
The inaugural general meeting was held on
November 11, 2016, when a regular board was elected and the first
regular Executive Committee appointed.
Families and children living with life-limiting
conditions are entitled to education about their
disease, information about risks and benefits of
treatment, and likely outcomes. This education and
guidance is an obligation of the medical community.
Families and children living
with life-limiting or chronically disabling conditions
should be encouraged to become partners with the
healthcare team in making decisions and in planning
treatments for the child.
The extended family suffers, as
well as the child, when a life threatening illness or a
chronic disorder strikes our families. Patients, and
their extended families, are entitled to compassionate
and expert medical care, effective control of pain and
physical complaints, and emotional and spiritual
Children should know what is
happening to them. Whenever possible, even very young
children should be involved in discussions about their
conditions and have a voice in the decision-making
Quality of life should be
maintained at the highest possible level when death
cannot be avoided, and when death occurs, it should be
made peaceful and dignified.
Support for the family must be
available after death.