The history of our coalition begins with the story of a little boy named Charlie and his grandfather Richard. In 2010, Richard Graham-Yool and his wife Penny relocated to East Lansing in order to be closer to their daughter Abigail’s family. Shortly after the move their three-year old grandson Charlie was diagnosed with an inoperable brain tumor and given a few months to live. It was in the aftermath of this diagnosis that Richard’s blend of intelligence, humanity and dynamism found its fullest expression. Richard co-founded the Art for Charlie Foundation in 2014, the year after Charlie died. Thanks to enormous community support and the generosity of hundreds of artists and local retailers, Art for Charlie raised thousands of dollars to help support Michigan families who lost or had a seriously ill child.
Read articleRichard then created a statewide conference in November of that year for, hospice doctors, nurses, social workers, chaplains and other caregivers as well as representatives from state government and the insurance industry to come together to share experience and knowledge across the state of Michigan regarding pediatric hospice and bereavement support.
The conference was a first of its kind in our state. The day was split into two sessions, the morning focusing on pediatric hospice and the afternoon session on bereavement support. More than 90 attendees came from around the state. Speakers included James Fahner, MD, of the De Vos Children’s Hospital in Grand Rapids and Dr. Ken Pituch of the C.S. Mott Children’s Hospital in Ann Arbor, and Jerome Wakefield, PhD, of New York University.
Key findings were that hospice and bereavement are closely interrelated and should be considered as a single topic for the future, and that there is a need for greater understanding and continuing dissemination of information on pediatric hospice. This conference was the seed of our coalition.
The next year an Art for Charlie Art Show and Auction again raised several thousand dollars to support families who would benefit from added support. Volunteers recruited by Richard hosted a second pediatric palliative care and bereavement conference attended by over 100 professionals and parents from around the state.
The theme of the 2015 conference was “Pediatric Palliative Care — Here and Elsewhere.” Representatives from other states talked about of the benefit of statewide pediatric palliative care coalitions. Following that meeting our organization was founded and a board of volunteers began meeting regularly to establish its mission and its goals and to take on the task of promoting state-wide access to palliative care and hospice services.
In 2016 the coalition was established and a board of directors was elected. Richard and a group of dedicated volunteers continued to support the annual conference.
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In spite of his declining health, Richard was able to organize the coalition’s fourth annual conference, held at Michigan State University in November 2018, an event which again brought together over 100 of the state’s most gifted professionals from the worlds of medicine, psychology and social work as well as families whose lives have been touched by their care. Even in his hospice bed, days before he passed away, Richard was hard at work planning the November 2019 conference.
After Richard’s death, the Children’s Palliative Care Coalition of Michigan became a 501c3 non profit organization on July 1, 2019.
For the next 6 years or coalition was supported administratively by Martha Levandowski and Kim Gools of Association Partners LLC. Their tireless work and dedication kept our group moving forward in our educational and advocacy efforts.
During these 6 years the coalition’s efforts helped establish two important state initiatives.
In 2020 Governor Gretchen Whitmer signed legislation that requires Michigan schools to accept advanced care plans for any student with an appropriately created emergency care plan that may include limits to attempts at resuscitation.
In December 2024 Michigan Medicaid released a bulletin that describes how, beginning in February 2025, programs that provide comprehensive care for eligible children with medical complexity will be reimbursed.
Both of these efforts were strongly supported by the coalition.
In August 2025 our Michigan Coalition became an affiliated partner with the Pediatric Palliative Care Coalition of Pennsylvania. Our team had met Betsy Hawley their coalition’s executive director back in 2016. The PPCC uses its administrative experience to support several state coalitions in our work and is already proving to be of great benefit to our efforts to educate professionals and parents and to advocate for improved services.
