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Family care conference organized to help parents caring for chronically ill children

ANN ARBOR, Mich. — North Star Reach, the medical specialty camp for children with serious illnesses outside of Ann Arbor, will host a free virtual two-day conference, bringing caregivers together with leading medical, mental health and wellness professionals today and Thursday.

The program is dedicated to parents and caregivers of children with complex medical needs who are seeking to speak directly with pediatric healthcare providers to help them cope with unique challenges they are facing due to Covid-19.

Keynote presentations, panels, and workshops — including sessions on coping with social isolation and caregiver PTSD — are intended to help parents focus on their health and well-being.

“We can’t change our children’s diagnosis, but we can change how we choose to deal with the diagnosis,” said Mary Ann Fithian, conference chairwoman, who also is the mother of a child with a serious chronic illness. “Our hope is that parents will learn some new strategies to feel like they have more control so they can thrive as caregivers, not just survive.”

Dr. Kristin Ann Kullgren, clinical psychologist at Michigan Medicine Mott Children’s Hospital, will talk about specific parenting strategies for families caring for chronically ill children in her keynote “From Trauma to Resilience: Thriving (Not Just Surviving) with Your Child’s Illness.”

The conference also will focus on issues of inequities in health care, especially related to families caring for children with sickle cell disease, one of North Star Reach’s core medical populations. A unique design of the conference is that topics will be addressed from a range of personal and professional perspectives.

To discuss issues of inequality in health care, the mom of a child with sickle cell disease, Shavonn Burgess, LPC and CEO of Kennedy’s Village, will join a panel with a prominent pediatric physician from Helen Devos Children’s Hospital, Dr. Matthew Deneberg, and a leading pediatric surgeon from Michigan Medicine C.S. Mott Children’s Hospital, Dr. Erika Newman.

The closing presentation from 5 to 6 p.m. Eastern time Thursday will feature a well-known pediatric sickle cell disease clinician, Dr. Patrick T. McGann from Cincinnati Children’s Hospital, who recently published an editorial in the New England Journal of Medicine about the inequities in health care affecting families caring for children with sickle-cell anemia.

Benefits of this free conference for parents and caregivers include:

— Discover new ways to cope with stress related to caring for a chronically ill child and improve own health and well-being;

— Opportunity to meet, learn and share experiences with others who have had similar challenges caring for seriously ill children;

— Access to new community resources;

— Gain sense of belonging and decrease feelings of isolation caregivers often experience.

The virtual conference is open to the public and all are welcome. To see the full program schedule and to register online, go to https://bit.ly/NSR_FamilyCareConference.

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