Our small but mighty team (from NY, ME, and MA) came together last week for our final in-person team meeting of 2024 to discuss what inspires us and our activities for 2025. It's always good to have the opportunity to meet live! #ThisSharedJourney Blyth Lord Jennifer Siedman Chrissy Salley, Ph.D. Alison Me Devin Rojas Carol Trager Ashley Hill Zachary Brewer Claire Mills
Courageous Parents Network
医院和医疗保健
Newton，MA 2,123 位关注者
501c3/nonprofit & digital platform bringing resources to families & medical providers caring for seriously ill children
关于我们
CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers navigate the illness journey with support and a sense of community. At the center of CPN are parent and clinician voices that illuminate and share the lived family experience, focusing on social, functional, and emotional needs and the positive impact of “palliative-aware” practices, regardless of diagnosis and without bias. CPN resources include video and podcast interviews, educational guides and learning path- ways, parent-generated blogs, and a clinician portal offering materials for use in self- and colleague education. CPN’s programming includes a robust social media presence, monthly educational webinars and newsletters and both live and virtual presentations to clinician audiences, biotech leaders, and patient organizations. CPN partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets. CPN staff also presents at family and industry conferences, and at pediatric hospital Grand Rounds. For more information visit CourageousParentsNetwork.org and email us at [email protected]
- 网站
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https://courageousparentsnetwork.org/
Courageous Parents Network的外部链接
- 所属行业
- 医院和医疗保健
- 规模
- 2-10 人
- 总部
- Newton，MA
- 类型
- 非营利机构
- 创立
- 2014
- 领域
- rare disease、pediatric、palliative care、family support、rare disease、caregiver、sibling support、neurodegenerative、clinical education、special needs、clinical trial、resiliency、anticipatory grief、parent bereavement、parenting、parenting、feeding tube、decision making、Tracheostomy、pediatric palliative care、psycho-social、physician resources、well-being、nonprofit和spinal fusion
地点
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主要
获取路线
US，MA，Newton
Courageous Parents Network员工
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Kate Tighe
VP, Head, US Public Affairs & Patient Advocacy - Immunology
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Jonathan Sands
Business Operations & People Leader | Tech, Future of Work, Education, Healthcare | Stanford MBA
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Alison Me
Development and Communications Associate at Courageous Parents Network
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Lindsey Topping-Schuetz
Advocate for children with disabilities.
动态
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Every individual, including children, experiences loss in their own way. Research has shown that despite seemingly overwhelming grief and the lifelong impact of loss, each of us has the capacity to integrate the loss over time, and that children are very resilient. This guide will help you tend to a grieving child. #siblings #loss #grief
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We want to give a big shout-out to our first class of Parent Champions who "graduate" tonight. These 6 exceptional parents have grown the CPN network through presentations to clinicians and patient organizations across the United States. We are eternally grateful for all their efforts. Learn more about them: https://bit.ly/3YWVqpF Ashley Waddell Tingstad Aubrey McKenzie Jones, Ph.D. Maria Hopfgarten Parvathy Raman Krishnan
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What a treat to meet the huge, gorgeous Palliative and Complex Care teams and clinicians at UPMC Children's Hospital of Pittsburgh and present Carol May, RN (the founding force behind this Division at the hospital) with the Ilene Beal Foundation 2024 Courageous Provider Award. #pedpc
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A story has the power to change lives. #ThisSharedJourney is truly about how the stories of others help to orient, equip and empower caregivers and clinicians. Courageous Mom Caryn Anthony found strength in knowing that "everything [she] learned by the seat of [her] pants" would live on and help others through her blogs. Help us bring more stories to more families: https://bit.ly/4hTY6NC
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Genetic testing has the opportunity to bring answers to caregivers of children with medical complexity. Navigating insurance coverage can be a barrier. We are excited that our partners at Child Neurology Foundation have developed this webinar.
?? Exciting News: We're launching Navigating Insurance for Genetic Testing, a 3-part webinar series aimed at easing the challenges of insurance coverage for genetic testing. Episode 1: Understanding Your Insurance will guide you in decoding your policy, organizing your paperwork, and understanding key terms. Future episodes will cover the appeals process and share resources to help you navigate this complex journey with confidence. Stay tuned for dates and join us in this empowering series. #GeneticTesting #WebinarSeries #InsuranceSupport #CNFCommunity #childneurology
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Pediatric Psychologist | Director, Clinician Engagement @ Courageous Parents Network | Caregiver Mental Health Advocate
A big shoutout to the team at Dear NICU Mama who produces a wonderful podcast for their community. I was thrilled to join them along with parent caregiver, Naomi Williams, for this interview. Thank you for using your platform to share how pediatric palliative care can help support families in the NICU as they advocate and make decisions for their baby. Naomi is in her 15th year as a mom to child living with medical complexity and brings a powerful and hopeful perspective. I hope you will listen. #pedpc #caregiverwellbeing #NICU #pediatrics
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When parents don't know where to go or what to expect, CPN is there to guide them. Through the voices of parents who have been there, and the clinicians who care for families of medically complex children, CPN's resources offer a safe place to explore decisions, find guidance and help families know good days. Our #10for10 campaign reflects our commitment to travel this road with them by offering essential online resources and a compassionate community. Join us in celebration of the strength of families and CPN's 10th anniversary. Donate: https://bit.ly/40MZM5k #ThisSharedJourney #CourageousParentsNetwork
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It is fitting that on the 1 year anniversary of the release of #NeuroJourney, our friend and treasured partner Julie Hauer, fierce advocate for pediatric palliative care, beloved clinician serving children and families, and primary medical author of NeuroJourney.org was recognized with the prestigious Cunniff Dixon Foundation Physician Award. Boston Children's Hospital https://bit.ly/4fd7VEw
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November is Children and Teens Grief Awareness Month. Children’s literature can offer a gentle and developmentally appropriate way to address complex topics – such as death and grief – with children. Reading books with trusted adults can facilitate conversation and strengthen relationships. Check out CPN's curated bibliography. https://bit.ly/3UGBWUW #griefawareness #grief #raredisease
Bereavement Bibliography
courageousparentsnetwork.org