Courageous Parents Network Parent Champions Program
About This Magazine On the pages that follow you will meet Courageous Parents Network’s first class of Parent Champions, joining us to amplify the voice of parents as advocates of pediatric palliative care, sharers of the lived family experience, and representatives of Courageous Parents Network. Through this program, CPN is leveraging our existing expertise in championing pediatric palliative care to healthcare providers and patient organizations to bring palliative-informed, family perspectives to more families, clinicians, and patient organizations nationwide. Our Parent Champions share CPN’s mission to empower and orient parents and others caring for children with serious illness and medical conditions.
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Our Champions CPN began soliciting for applications in early summer and received 24 from across the country. After a rigorous schedule of interviews, six Parent Champions were selected representing different diseases, and geographic locations and include both bereaved parents and those still caring for their child. This October the six Champions came together in Boston for training and orientation with CPN staff and Living Proof Advocacy, professional advocacy storytelling consultants. It was a powerful three days, and culminated in a presentation to pediatric residents at Massachusetts General Hospital for Children. (For our next class of Parent Champions – TBD – we hope to have some Champion fathers too!)
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Funding Courageous Parents Network is grateful to our funders who have helped make the Parent Champions program possible. With a commitment toward building capacity within the rare disease community and improving people’s lives through science, Sanofi stepped forward as lead funder providing CPN with the opportunity to build the structure and curriculum for the program and select our Parent Champions. Additional funding came from the Kanarek Family Foundation. Robin and Joseph Kanarek founded the Kanarek Family Foundation to honor the memory of their son, David, who lost his life to leukemia at the age of 15. The mission of the foundation is to improve the quality of life for those affected by cancer and other serious conditions through the promotion, education, and integration of palliative and supportive care into all areas of healthcare. The program is not yet fully funded, with much work to be done. We invite and certainly welcome additional donations. When making the gift, please indicate it is to support the Champions program.
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Champions from Across the Country
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Ashley Waddell Tingstad Meet Ashley Ashley Waddell Tingstad is the wife of a veteran and the mother of three children - Rosa, Leo, and Viggo. Viggo died at the age of six months from complications related to Trisomy 5p, a rare genetic condition. Ashley was an elementary school teacher before she went to law school. She switched from litigation to estate planning after accompanying her father through hospice and death in 2018. She runs her own law practice in Ann Arbor, Michigan. Ashley is a writer, lover of nature, and dedicated practitioner of yoga.
When we finally got a palliative consult, we knew we had finally found the expertise that we so desperately needed. Our palliative doctors answered the questions no one else wanted to touch. Palliative care helped us keep Viggo's subjective experience at the center of every decision, and gave us the resources to provide him with comfort while he was here.
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What Being a Champion Means to Ashley The CPN community has been such an amazing source of support and comfort for me and my family during the dark days after our son died. I wish I had discovered CPN earlier, when we were still in the hospital, struggling mightily with medical decision-making and feeling very alone. I am passionate about supporting CPN’s mission as a Parent Champion because I want to make sure that no family facing a diagnosis like Viggo’s will miss out on CPN support if they want it. I am also thrilled to be part of an organization that I love and admire so much. I deeply resonate with the mission of CPN to promote understanding, coping, grieving and healing for families touched by incurable pediatric disease. As a Parent Champion, it will be my privilege to listen to parents and providers. I want to learn to respond to their questions and concerns in ways that are validating, empowering, and thought-provoking. Viggo was and continues to be my greatest teacher. I am eager to learn how to tell his story in a way that is concise, professional, and educational, because I believe his story can help to reduce unnecessary suffering around death– the kind of suffering that is born of denial, dishonesty, confusion, medical trauma, and regret.
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Dr. Aubrey McKenzie Jones Meet Aubrey Dr. Aubrey McKenzie Jones is the Associate Director for a national non-profit with a focus on creating opportunities and increasing success for marginalized groups. Through her lived experiences, education, and passion for people Aubrey advocates for families and individuals by educating and spreading awareness of human rights and responsibilities. Aubrey’s late son De’Aubrey Emmanuel Marquel Jones was born a micro-preemie at 23 weeks gestational age. He lived with multiple diagnosis’ that were acquired because of his pre-term birth, namely hydrocephalus. De’Aubrey lived one month before his 15th birthday.
The 15-year journey with her son was very isolating for Aubrey and showed her the importance of palliative care as she did not have palliative care until her son’s very last month. Within that short time, Aubrey gained support that helped her feel less alone and showed her how important it is for families of children with terminal diagnoses to be connected to a quality palliative care team immediately. 7 PARENT CHAMPIONS PROGRAM
What Being a Champion Means to Aubrey This awareness of the importance of support for families caring for special needs individuals and personal life experiences is why Aubrey is excited to be a part of the Courageous Parents Network team. Aubrey is a champion and ambassador for families; she believes in and supports CPN’s mission to be a beacon for families caring for individuals with serious illnesses.
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Emily Callaway Meet Emily
Emily is a mom of four kids, two doodles, and wife to a railroad conductor. Residing in Richmond, Virginia, she spent the last 10 years as a teacher, until the care for her daughter Chloe became a full-time job. Chloe was officially diagnosed with a PIK3CA activating mutation and experiences chronic pain.
When preparing for discharge with no interventions left at the time to trial, Chloe was sent home on palliative care services through Noah's Children in Richmond. This team has been nothing short of amazing. Her nurse will join me to attend appointments with doctors new to her team, they check in throughout the week, and they come for home visits. 9 PARENT CHAMPIONS PROGRAM
What Being a Champion Means to Emily I am a champion to not only help advocate for parents who feel alone on this journey, but to be a voice for kids like Chloe whose lives revolve around appointments, therapies, and scary conversations. Receiving a lifethreatening diagnosis feels as if your entire world has flipped upside down and your life changes in a single moment or phone call. Knowing there is someone else out in the world who knows the feeling and is a few steps ahead of you on this scary journey and who is willing to listen can make all the difference. Having a child with a complex condition whose teams involve dozens of medical professionals, I find it my mission to advocate for our daughter's needs. I want medical providers to know how to approach someone like Chloe who is scared of simple things like a physical exam because of the trauma she has endured, or how to educate a pediatric patient on their current care plan in terms they can understand. I have witnessed the positive impact for these children of building trusting patient relationships, and I hope that all pediatric medical providers can do the same. 10 PARENT CHAMPIONS PROGRAM
Lindsey ToppingSchuetz Meet Lindsey
Lindsey lives in Washington with her husband and son, Owen. Owen has Cri du Chat Syndrome and a secondary chromosomal abnormality. Lindsey and her husband were introduced to palliative care following Owen’s prenatal diagnosis. She is a strong community leader and a vocal advocate for change. In 2019 she began testifying before Washington State Legislators for disability and rare disease initiatives in the state.
In a very short time, my husband and I had gone from first time parents to the terrifying and isolating world of rare disease parenting. We felt like we’d been thrown onto an island all by ourselves. The palliative care medical director was the first doctor that spoke to us with compassion and honesty. In that one conversation he changed our lives. He and his team were our lifeboat. They assured us that although this island wasn't what we pictured parenthood to look like... over time we would make it our home and most importantly we wouldn’t be alone. 11 PARENT CHAMPIONS PROGRAM
What Being a Champion Means to Lindsey Since I received my son’s prenatal diagnosis of Cri du Chat Syndrome and a secondary chromosomal abnormality, I have made it my mission to demystify and advocate for pediatric palliative care. Palliative care has helped us understand and navigate the many difficult decisions we must make for our son. We are stronger advocates, more confident parents and best of all we get to enjoy more time with Owen because of the support we have been given. Despite all the hard stuff, I am forever grateful to be Owen’s mom. To get to love him and be loved by him. He is authentic and kind. He is funny and yet he’s never spoken a word. He doesn’t care to meet others’ expectations and timelines. He is present at each moment and gives the best snuggles ever. Loving Owen has taught me to love myself too. I have found courage in sharing our story and embracing the vulnerability of motherhood. My hope is that people will feel connected to Owen and empathy will grow. 12 PARENT CHAMPIONS PROGRAM
Maria Hopfgarten Meet Maria Maria lives with her husband, daughter Sarah, and rescue dog Max in Denver, Colorado. She lost her son Jacob at age ten years old to mitochondrial disease. Maria has been supporting families living with mitochondrial disease for over a decade including being the President of the former non-profit Miracles for Mito. Maria is an active Parent Partner at Children’s Hospital Colorado and has been a Parent voice for many chronically ill children and bereaved parents. Today, Maria is part of Children’s Parent Bereavement Program including being a Parent-to-Parent to support other bereaved families.
Palliative care was part of Jacob’s life since he was three years old. This helped us to make educated decisions about his care. Being part of palliative care also gave Jacob access to a lot of services and consultation for our family to always drive the best care decisions with his underlying condition and where Jacob was on his life journey. Palliative care means quality of life to our family. 13 PARENT CHAMPIONS PROGRAM
What Being a Champion Means to Maria I had the honor of being on a CPN parent panel around continuing family bonds and honoring your child’s legacy. I was so impressed with that first experience with CPN, and I learned so much from the panelists. When I saw that CPN was looking for a Parent Champion, I didn’t hesitate to apply. I know that Parent advocacy is one of the most powerful tools in advocating for your child in healthcare and in life. If I can help parents and physicians to be successful parent advocates by telling my story and supporting parent advocacy, I feel I have contributed a little and kept on my son’s legacy. It gives me meaning to help other parents in my situation, and is a beautiful way for me to continue to be Jacob’s mom.
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Parvathy Raman Meet Parvathy Parvathy is the mother of two children, Ira and Yash. Through their diagnoses, she became a Rare Disease Specialist, an expert in Patient Advocacy and Patient Caregiver education. She has a Masters in Clinical Nutrition. She is a passionate advocate for patient- and familycentered care with a special focus on Mental Health for children with medically complex needs and their caregivers. After both her children were diagnosed with multiple rare/ultra rare and nano rare diseases, Parvathy has dedicated her life to empowering people worldwide to advocate for themselves no matter their location or diagnosis. Her daughter Ira died at age 4 and her son Yash is now 15 years old. Yash is seen at multiple medical centers across states.
Palliative care is the team that provides our family the most holistic medical experience possible in the face of chronic and acute chronic medical conditions. Having a team that helps us problem solve while advocating for the best care our child can receive has been comforting and empowering.
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What Being a Champion Means to Parvathy I am a mom to 2 medically complex children. My children have/had genetic disorders with no treatments or cures. Caring for our children has involved traveling to specialized clinical centers to ensure the best specialists could provide care for them. Through this journey we saw a global decline in health for our daughter and we made the decision to transition her to palliative care and eventually hospice. While dealing with her decline, we also learned our son has a life-limiting illness but that with aggressive surveillance his condition would be manageable. While we are thankful for specialists who continue to try their best to care for him, his treatments have needed complex care specialists to be a part of our team. While our destination remains unknown, our journey has been eventful. We hope that by sharing our experiences we can assist other families in alleviating some of the issues we experienced.
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About CPN Our Purpose To orient and empower parents and others caring for children with serious illness, by providing resources and tools that reflect the experience and perspective of other families and clinicians.
Our Vision Parents and others caring for children with serious illness have confidence that they are doing the very best they can for the child and family.
What We Offer CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers advocate for children living with serious illness and navigate the illness journey. At the center of CPN are parent and clinician voices that illuminate the lived family experience and focus on psycho-social and emotional needs, regardless of diagnosis and without bias. CPN resources include videos, podcasts, newsletters, a blog, social media posts, educational guides and learning pathways written for families, and a clinician portal offering materials for use in self- and colleague education. Programs include virtual events, and virtual and in-person presentations to clinician audiences, industry and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.
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