Family Care Conference

October 7-8

An event designed to help parents and caregivers of children with serious illnesses learn from professionals, and from one another.

During these unprecedented times, we believe in the healing power of community. That’s why we have organized this two-day virtual conference, expressly designed to bring parents and caregivers of children with serious illnesses together with leading medical, mental health and wellness professionals. 

By listening, sharing, and connecting through presentations, panels and workshops, together we will create a supportive, close-knit community to help us all learn from, and support, one another. 

The benefits of attending the conference 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

Thank you to the presenters and participants who joined us for our first annual Family Care Conference. Recordings of presentations, panels and breakout sessions are available on our Recorded Events page (with more presentations added weekly).

Featured Talks

KEYNOTE: Challenge by Choice: Community & Play Can Inspire You to Become Your Best Self

Patrick Smith, MA
Director of Camping,
North Star Reach

KEYNOTE: From Trauma to Resilience: Thriving (Not Just Surviving) with Your Child’s Chronic Illness

Kristin Kullgren, PhD
Clinical Psychologist,
Michigan Medicine’s C.S. Mott Children’s Hospital

A Conference Dedicated to Families of Children with Serious Health Conditions

Day 1

October 7, 2020

Day 2

October 8, 2020

Day 1 – Wednesday, October 7

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10:30 a.m. - 11:00 a.m.

Welcome Remarks

Kicking off our time together with a look at the “why” behind our two-day event

Meet Conference Chairperson Mary Ann Fithian and North Star Reach CEO & Founder Doug Armstrong. They will provide an overview of what to expect during our first virtual family care conference and how you can connect with presenters and other attendees.

Mary Ann Fithian
Serious Support Chairperson,
North Star Reach

Doug Armstrong, RN, MS
Founder & CEO,
North Star Reach

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11:00 a.m. - 12:00 p.m.

KEYNOTE: Challenge by Choice: Community & Play Can Inspire You to Become Your Best Self

An approach to cultivating personal confidence and growth through intentional choices and play

Patrick Smith has spent much of his professional life as a camp director, creating adaptive and inclusive programs for children with serious health challenges and their families. He will share his unique approach for encouraging people of all ages to safely step outside their comfort zones to find new potential in themselves.

Patrick Smith, MA
Director of Camping,
North Star Reach

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12:00 p.m. - 1:00 p.m.

Lunch Break

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1:00 p.m. - 2:00 p.m.

Breakout Session: A

Post-Traumatic Stress Disorder (PTSD)

Learn more

An estimated 20% of parents with medically fragile children meet the clinical criteria for PTSD. The triggers are often different for every parent, but the results can be devastating. Kristen Marzolf, founder and director of the Family Resilience Group, will look at those triggers and what you can do to cope. As a therapist, she has made it her mission to build a practice that goes beyond traditional talk therapy to transformative family change. ( (She frequently works with families caring for a child who has received an organ transplant.) She will explore when you may need to see a professional for more support, and she will share innovative approaches to treatment, including resources that can help if you suffer from PTSD related to your child’s diagnosis. This session will leave you with resources and knowledge to get the care you need as the caregiver.

Kristen Marzolf, LCSW, SEP
Founder & Director,
Family Resilience Group

Yoga for Relaxation & Stress Relief

Learn more

Caring for a child with medical needs can be overwhelming and isolating. It leaves us exhausted, anxious, and even depressed. It leaves us unable to give the kind of care we want to, unable to give the care we need to. In this beginner session, the founder of Zion Well Yoga + Meditation Studio will share yoga relaxation techniques. This will include poses that are specifically designed to provide caregivers with resilience.

Aubrey Schupbach
Founder, Zion Well Yoga + Meditation Studio

Prayer & Reflection

Learn more

A challenging illness affects all members of the family. Often, we become so overwhelmed by the situation the very things that we have known most of our lives to help us through tough times are forgotten. In this session our facilitators will help you to formulate reflections and prayers that meet you where you find your strength. This is a non-denominational session meant to send you away with a working guide for prayer and reflection.

Danielle Groth
EFT Practitioner and Meditation Facilitator,
I Am Well, LLC

Rev. Victoria Lovell, BA, MEd, MDiv
Associate Pastor,
Zion Lutheran Church in Ann Arbor

 

The Need for Sleep

Learn more

Every parent has lost a night of sleep when caring for their child who has an illness. For parents of chronically ill children this night is countless nights.  The NIH has done studies on how parents of sick kids have higher levels of the stress hormone and how it relates directly to sleep.  In this session we have a sleep specialist that will give parents realistic goals for sleep.  We will also be discussing sleep hygiene and what you can do to help your whole family get better sleep.

 

Kathy DeRue, MD, MS

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2:00 p.m. - 3:00 p.m.

Breakout Session: B

Sibling Support

Learn more

Parents are not the only ones who deal with the life changing effects of having a child with a serious health challenge. Siblings of the chronically ill child have the difficult task of learning to live with this stress. Siblings often exhibit feelings of guilt, anxiety, jealously, fear, and anger over the life they have been thrust into. In this session we will look at what you can do to support your healthy child, what signs you might watch for that indicate your sibling child may need extra support. This session will feature a conversation between Mary Ann Fithian, whose daughter Faith lives with a chronic illness, and Faith’s older brother, Will. 

 

Mary Ann Fithian
Conference Chairperson
North Star Reach

Will Falzon

Post-Traumatic Stress Disorder (PTSD)

Learn more

An estimated 20% of parents with medically fragile children meet the clinical criteria for PTSD. The triggers are often different for every parent, but the results can be devastating. Kristen Marzolf, founder and director of the Family Resilience Group, will look at those triggers and what you can do to cope. As a therapist, she has made it her mission to build a practice that goes beyond traditional talk therapy to transformative family change. (She frequently works with families caring for a child who has received an organ transplant.) She will explore when you may need to see a professional for more support, and she will share innovative approaches to treatment, including resources that can help if you suffer from PTSD related to your child’s diagnosis. This session will leave you with resources and knowledge to get the care you need as the caregiver.

Kristen Marzolf, LCSW, SEP
Founder & Director,
Family Resilience Group

Self-Care

Learn more

When polled about the greatest challenges facing parents of children with serious illnesses, the top answer was the ability to provide self-care for the caregiver. The reality is most parents, even those with healthy children, struggle to find time for self-care. Caring for a sick child makes it exponentially more challenging. In this session, North Star Reach Medical Director, Rebecca Patrias, MD (“Dr. Becky”), a self-proclaimed self-care expert, will provide you will a self-care assessment followed by an action plan to make sure you begin to care for your most difficult patient: Yourself!

 

Rebecca Patrias, MD
Medical Director,
North Star Reach

Cultivating Resilience Through Storytelling

Learn more

“Giving shape to painful experience is powerful because it helps us to see first, how we got through it. Second, how we can share it. The experience doesn’t stay trapped inside us—instead the art of arranging and transforming it reduces the burden. It no longer belongs only to you.” The writer Karen Bender shared this advice in an article in The New York Times years ago. You don’t have to be published author or experienced storyteller to learn the art of arranging and feel the relief (and even joy) that comes from creating a story. In this workshop, I’ll share some simple techniques to help you think about giving shape to your experience. 

Ami Walsh, MFA
Experience Design Strategist,
North Star Reach

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3:00 p.m. - 4:00 p.m.

Afternoon Break

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4:00 p.m. - 5:00 p.m.

PANEL: Caring for the Caregiver

Ways to help take care of yourself so you can continue to care for others

In this panel discussion, facilitated by Mary Ann Fithian (Serious Support Chairperson) and North Star Reach’s Medical Director, Dr. Becky Patrias, we hear from parents and practitioners on what it is like being a caregiver and what strategies you might use to thrive rather than just survive. We will be taking questions during this session. 

Kristin Kullgren, PhD
Clinical Psychologist,
Michigan Medicine’s C.S. Mott Children’s Hospital

Vicky Lovell, BA, MEd, MDiv
Associate Pastor,
Zion Lutheran Church

Kathy Prout
Caregiver

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5:00 p.m. - 6:00 p.m.

RECORDED TALK: The Isolation of Caring for a Chronically Ill Child

Social isolation can impact the whole family when managing the care of a sick child

Along with the burden of managing the health of a sick child, chronic illness can isolate the whole family. A discussion about how families can cope with the physical, mental and social limitations that caregivers face and a look at helpful resources. In this recorded conversation, facilitator Mary Ann Fithian, Serious Support Chairperson and a caregiver, will be joined by three other parents of children with complex medical needs: Bridget Schank, Kathy Prout and Wendy Wilson.

Bridget Schank
Caregiver

Kathy Prout
Caregiver

Wendy Wilson
Caregiver

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6:00 p.m. - 7:30 p.m.

Dinner Break

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8:00 p.m. - 10:00 p.m.

Evening Entertainment & Social Mixer

Live music and entertainment from 8-9 pm, followed by a social hour

We’re delighted to welcome the immensely talented Orlando-based rap collective specializing in freestyle rap, music and comedy. Free Daps will join us for a live performance starting at 8. Their talent and decorated resume as rappers and improvisers have garnered a dedicated following throughout North America. Jordan Keyes and Isaac Folch, who headlined our opening campfire events this summer, currently perform at Disney Springs four and five nights a week and entertain audiences of all ages, including at college and corporate events.

Afterwards, conference participants and presenters can unwind from the day and connect while enjoying some unstructured time for conversation.

 

Isaac Folch
Free Daps,
Orlando, Florida

 

Jordan Keyes
Free Daps,
Orlando, Florida

Day 2 – Thursday, October 8

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10:30 a.m. - 11:00 a.m.

What on Earth is “Campily”?

Our experienced staff kick off our second day with a morning camp tradition

Our team has created a special morning welcome for our second day together. 

Mike “Coach” Parker
Special Initiative Coordinator,
North Star Reach

Patrick Smith, MA
Director of Camping,
North Star Reach

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11:00 a.m. - 12:00 p.m.

KEYNOTE: From Trauma to Resilience: Thriving (Not Just Surviving) with Your Child’s Chronic Illness

Advice from a pediatric psychologist

Increasingly, research suggests the role of caregiver can put parents, siblings and other family members at risk for developing Post-Traumatic Stress Disorder. Dr. Kullgren discusses strategies for coping and managing symptoms that can benefit all family members. 

Kristin Kullgren, PhD
Clinical Psychologist,
Michigan Medicine’s C.S. Mott Children’s Hospital

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12:00 p.m. - 1:00 p.m.

Lunch Break

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1:00 p.m. - 2:00 p.m.

Breakout Session: C

Building Your Bunch

Learn more

Friendships are always important in your life. During times of crisis friendships, you can rely on become even more important. Friendships and relationships that can weather the storm of having a child with a serious illness are the friendships that make up your Bunch. In this session, we talk to a mom with a sick kid and members of her bunch. We will talk about what works and what doesn’t, and what as the caregiver you can share with your bunch to make the difficult storm easier to weather.

 

Mary Ann Fithian
Serious Support Chairperson,
North Star Reach
Caregiver

 

Jeni Sobbry
Caregiver

Stress Management

Learn more

Stress management is an important skill for all parents, add a chronic illness in to the equation it becomes even more essential.  In this session our facilitators will give you stress management techniques you can take with you everywhere you go.  Some of the techniques used may even be helpful for your sick kid!

Danielle Groth
EFT Practitioner and Meditation Facilitator,
I Am Well, LLC

Rev. Victoria Lovell, BA, MEd, MDiv
Associate Pastor,
Zion Lutheran Church in Ann Arbor

Heart Warriors

Learn more

A leading pediatric cardiologist shares insights for helping her pediatric patients and families to cope with the challenges associated with a congenital heart condition.

 

Courtney Strohacker, MD
Pediatric Cardiologist,
Michigan Medicine’s CS Mott Children’s Hospital

Cultivating Resilience Through Storytelling

Learn more

“Giving shape to painful experience is powerful because it helps us to see first, how we got through it. Second, how we can share it. The experience doesn’t stay trapped inside us—instead the art of arranging and transforming it reduces the burden. It no longer belongs only to you.” The writer Karen Bender shared this advice in an article in The New York Times years ago. You don’t have to be published author or experienced storyteller to learn the art of arranging and feel the relief (and even joy) that comes from creating a story. In this workshop, I’ll share some simple techniques to help you think about giving shape to your experience. 

 

Ami Walsh, MFA
Experience Design Strategist,
North Star Reach

}

2:00 p.m. - 3:00 p.m.

Breakout Session: D

Depression & Anxiety

Learn more

Rebecca Patrias, M.D., is North Star Reach’s Medical Director and she also runs a private practice in Chelsea. More and more, patients are turning to their family doctor for help with depression and other mental health issues. She will talk about resources available to families and share self-management skills she has found useful with the patients under her care.

 

Rebecca Patrias, MD
Medical Director,
North Star Reach

Supporting Transplant & Cardiology Families

Learn more

This session will focus on how parents can improve psychosocial and health outcomes among children and adolescents who have had solid organ transplants. Both clinicians focus on tailored intervention programs to enhance medication adherence, with an emphasis on promoting self-management skills.

 

Melissa Cousino, PhD
Clinical Psychologist,
Michigan Medicine’s C.S. Mott Children’s Hospital

 

Emily Fredericks, PhD
Clinical Psychologist,
Michigan Medicine’s C.S. Mott Children’s Hospital

Navigating Friendship & Relationship Challenges

Learn more

Providing care for your child is often something you do invisibly. Your friends, family, and community are often unaware of the everyday demands of caregiving. That can cause feelings of isolation and loneliness. These feelings have a direct impact on the relationships you are in. In this session we will discuss strategies for keeping friendships and relationships active when you need them most.   

 

Karin McNicholas, MSW, LCSW
Clinical Psychologist,
Chicago, IL

Dennis McNicholas, JD
Family Mediator,
Chicago, IL

Promoting Equity for Your Child

Learn more

Every child should have the same access to the support and care they need regardless of their individual circumstances. This session will be led by Shavonn Burgess, mom of a Sickle Cell warrior and co-founder with her husband, Eric, of a “Kennedy’s Village,” whose mission is to bridge the gap between Sickle Cell Disease research and care. This session opens the door to a topic that is fiercely needed to address inequities in our healthcare system. 

 

Shavonn Burgess, LPC
Co-Founder/CEO,
Kennedy’s Village, Inc.

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3:00 p.m. - 4:00 p.m.

Afternoon Break

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4:00 p.m. - 5:00 p.m.

PANEL: Equity in Healthcare

How can we all contribute to creating equality in health care for all?

Featuring Matthew Denenberg, MD (Chair of North Star Reach’s Medical Advisory Board), pediatric surgeon Erika Newman, MD, and Shavonn Burgess (Co-Founder/CEO of Kennedy’s Villgage), this panel will discuss what we can do to make sure we are all a part of the solution of equality in health care for all. North Star Reach’s Child Life Specialist Jessica Doletzky will also join the conversion.

Matthew Denenberg, MD
Vice President for Medical Affairs,
Helen DeVos Children’s Hospital

Erika Newman, MD
Pediatric Surgeon,
Michigan Medicine’s C.S. Mott Children’s Hospital

Shavonn Burgess, LPC
Co-Founder/CEO,
Kennedy’s Village, Inc.

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5:00 p.m. - 6:00 p.m.

SPEAKER: How we can affect change in healthcare inequality

Perspectives from a leading sickle cell disease clinician

“There may be no population of patients whose health care and outcomes are more affected by racism than those with sickle cell disease,” Dr. Patrick McGann wrote in a recent editorial in the New England Journal of Medicine, which he co-authored with a colleague. McGann will discuss the impact of inequities in healthcare, especially as it affects families caring for children with sickle cell disease.

Patrick T. McGann, MD, MS
Pediatric Hematology & Oncology,
Cincinnati Children’s Hospital

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6:00 p.m. - 7:30 p.m.

Dinner Break

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8:00 p.m. - 10:00 p.m.

Evening Entertainment & Social Mixer

Live music and entertainment from 8-9 pm, followed by a social hour

A chance for conference participants and presenters to unwind from the day and connect while enjoying some terrific live music and conversations. Singer Cristina Holder-Rodriguez, a student in Vocal Performance at the University of Michigan and dedicated North Star Reach program volunteer, will perform, starting at 8 pm.

Registration

2020 Family Care Conference
This conference is free and open to the public. However, registration is required.
If you would like to attend a breakout session, please select the sessions you’d like to attend. You can always switch but this will help us with our planning. (If you cannot make a breakout session but wish to attend one or more other presentations, simply leave these fields blank.)

Participant Information

Affiliation

Conference Participant Waiver

I understand that North Star Reach may make audio/visual recordings of the virtual Family Care Conference (Oct. 7 & 8, 2020). I give North Star Reach and its affiliated entities (including SeriousFunChildren’s Network, Inc.), permission to use conference photographs and audio/video recordings to promote public understanding and support for children with serious illnesses and for other media, promotional and/or advertising purposes. Note: All sessions will be recorded; however, attendees will have the option of turning off their video camera during interactive sessions. *
In the interest of respecting participants’ privacy, I agree not to take screenshots or to record in any manner presentations, breakout rooms, social mixers, chats or other conference activities. *

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North Star Reach Camp

1200 University Drive
Pinckney, MI 48169

FINANCIAL SUPPORT

North Star Reach is an independent nonprofit medical speciality camp based in Pinckney, Michigan. We provide life-changing camp experiences for children living with serious illnesses and their families, at no charge to them. You can support us today by making a donation.

Stay Connected

North Star Reach Camp

1200 University Drive
Pinckney, MI 48169

Stay Connected

FINANCIAL SUPPORT

North Star Reach is an independent nonprofit medical speciality camp based in Pinckney, Michigan. We provide life-changing camp experiences for children living with serious illnesses and their families, at no charge to them. You can support us today by making a donation.

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Inquiry Options *
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