Courageous Parents Network @courageousparentsnetwork.org · 15/04/2026NOW OPEN: PARENT CHAMPION APPLICATIONS CPN is seeking four parents/caregivers to join our Parent Champion Program - a unique, training-focused opportunity to transform your lived experience into meaningful advocacy and education. Learn more and apply: courageousparentsnetwork.org/pages/parent... 000
Reposted by Courageous Parents NetworkUMass Chan Medical School @umasschan.bsky.social · 29/12/2025UMass Chan launched the Rare Diseases, Real Stories podcast series in 2025 to shine a spotlight on the courage, resilience and advocacy work of families affected by rare diseases. All episodes are available: direc.to/oidj #AdvancingTogether2025 #RareDiseasesRealStories @courageousparentsnetwork.org 121
Courageous Parents Network @courageousparentsnetwork.org · 25/11/2025Sometimes the lessons caregivers learn in hospital rooms follow them far beyond. In Bud's piece, he shares a simple pulmonary-positioning technique that became a metaphor for holding grief, exhaustion, and tenderness. Read: courageousparentsnetwork.org/blog/good-lu... 000
Courageous Parents Network @courageousparentsnetwork.org · 17/11/2025Courageous Provider Award Nominations are OPEN! This award recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. For more information, visit: courageousparentsnetwork.org/courageous-p... Due by Friday, January 30, 2026, at 5 pm ET 000
Courageous Parents Network @courageousparentsnetwork.org · 09/10/2025Join CPN tonight at 8:00 PM ET! 000
Courageous Parents Network @courageousparentsnetwork.org · 03/10/2025Join CPN next Thursday In The Room! Learn more and register: courageousparentsnetwork.org/events/you-c...courageousparentsnetwork.orgUpcoming: You Can Never Be Too Prepared: Pediatric Disaster and Emergency Preparedness – Courageous Parents Network 000
Courageous Parents Network @courageousparentsnetwork.org · 25/09/2025After years of listening and learning from rare families and clinicians, Courageous Parents Network is excited to announce the launch of an updated digital presence!! Take a look around and let us know what you think! Email us at Connect@CourageousParentsNetwork.org #pedpc #pedatrics #raredisease 021
Courageous Parents Network @courageousparentsnetwork.org · 10/09/2025Pediatric Palliative Care can make all the difference in families affected by #childhoodcancer. @courageousparentsnetwork.org has developed a guide on this topic to help educate families & providers. Click the link below & share! English & Spanish courageousparentsnetwork.org/guides/impro...courageousparentsnetwork.orgImproving the Pediatric Cancer Care Experience with Palliative SupportPalliative care offers invaluable support to children and their families, regardless of the prognosis, by focusing on enhancing quality of life while managing a 000
Courageous Parents Network @courageousparentsnetwork.org · 08/09/2025Are you a clinician attending Nexus Summit 2025? CPN's @drchrissysalley.bsky.social, Eddie Day, & Naomi Williams will be presenting on how to incorporate CPN resources into communications & care. Join us for this virtual presentation on Sept 16th, 12:00 CDT. summit2025.nexusipe.org/sessions/int...summit2025.nexusipe.orgIntegrating Palliative Aware Care for Caregivers of Children Living with Serious Medical Conditions | Nexus Summit 2025This session focuses on supporting families of children with serious medical conditions through palliative medicine principles. Participants will engage with Courageous Parents Network's digital tools... 010
Courageous Parents Network @courageousparentsnetwork.org · 03/09/2025Join #ParentChampions Amy Graver and Aisling Melton with @drchrissysalley.bsky.social for a meaningful conversation about how palliative care can play an invaluable role in the care of a child with cancer. This event is hosted by CAC2 on September 11th. Register below. www.cac2.org/cac2c-events...cac2.orgCAC2 Webinar: Improving the Pediatric Cancer Care Experience with Palliative Support - CAC2In this webinar, join pediatric psychologist, Chrissy Salley, Ph.D., with parents Amy Graver and Aisling Melton, to learn how palliative care can help your child and family and also demystify common m... 011
Courageous Parents Network @courageousparentsnetwork.org · 02/09/2025Where the CPN team will be this month! #pedpc #NeuroJourney #Caregiver 000
Courageous Parents Network @courageousparentsnetwork.org · 09/08/2025NEW! @Courageous Parents Network is now offering #continuingmedicaleducation hours for eligible #InTheRoom events--at no cost through June 2026. Check out the CPN #InTheRoom page for details and to register!buff.lyCPN | EventsEmpowering parents and families of children living with serious illness. You are not alone. 000
Reposted by Courageous Parents NetworkCAPC @capcpalliative.bsky.social · 04/08/2025We are excited to announce that the 2025 CAPC Innovation Award will be presented to Blyth Lord, EdM, Founder & Executive Director of @courageousparentsnetwork.org, in recognition of her work driving transformative change in the care of infants, children, & adolescents living w/ a serious illness. 131
Courageous Parents Network @courageousparentsnetwork.org · 25/06/202570% of stress related to a well-planned trip occurs in the preparation phase, so let us help guide you along. courageousparentsnetwork.org/guides/trave...courageousparentsnetwork.orgTravel GuideTraveling with a child with medical complexity can be challenging but with extra planning, a family vacation can be a memorable and enjoyable experience. Planni 000
Courageous Parents Network @courageousparentsnetwork.org · 24/06/2025Announcing the 2025 CPN Courageous Provider Award recipient Camara van Breemen, MN, NP at Canuck Place Children’s Hospice, Vancouver, CA! We celebrate you along with colleagues who reached out to recognize you. Learn about Camara van Breemen & the Award: courageousparentsnetwork.org/pages/the-co... 000
Courageous Parents Network @courageousparentsnetwork.org · 16/06/2025Support CPN while also running the ICONIC Falmouth Road Race on Cape Cod! If you are interested in joining Team CPN or would like more details, please contact Team Captain Sarah Casey at sarah@courageousparentsnetwork.org We look forward to hearing from you! 010
Courageous Parents Network @courageousparentsnetwork.org · 11/06/2025Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. courageousparentsnetwork.org/events/paren...courageousparentsnetwork.orgParent Perspectives: Insights into Medical Decision-Making<p>Making major decisions about interventions such as feeding tubes or tracheostomies is one of the 000
Courageous Parents Network @courageousparentsnetwork.org · 21/05/2025Every parent wants to help their child be their best, regardless of their abilities. However, the education system and the process of setting #IEP goals can feel defeating when a child is #medicallycomplex. courageousparentsnetwork.org/blog/please-...courageousparentsnetwork.orgPlease Presume CompetencyEvery parent wants to help their child, regardless of their abilities be their best. However at times the education system and IEP goals do not presume competency. 000
Courageous Parents Network @courageousparentsnetwork.org · 06/04/2025Dr. Goldstein was one of the founding inspirations for CPN & our conviction of what is possible between a child's physician & parents who share the privilege and responsibility of their care. Help honor #ThisSharedJourney with a gift to our anniversary campaign. Visit buff.ly/I8xPjDh 000
Courageous Parents Network @courageousparentsnetwork.org · 05/04/2025At CPN, we know that hearing from others with similar experiences helps build a vocabulary that strengthens caregivers' confidence. Celebrate #ThisSharedJourney and honor the ongoing support we provide to our network by sharing the lived experiences of families and clinicians. Give: buff.ly/RJj9adu 000
Courageous Parents Network @courageousparentsnetwork.org · 03/04/2025CPN's mission has always been to help those caring for children with serious medical conditions feel less alone. #ThisSharedJourney celebrates how families and clinicians can positively impact each other when we share our stories and build community. Support CPN: www.every.org/courageous-p... 000
Courageous Parents Network @courageousparentsnetwork.org · 13/03/2025In this webinar from @pedpalcc.bsky.social, the presenter will discuss their experience with their clinic’s 6-year history of using medical cannabis for children with palliative care needs. tfaforms.com/4842636tfaforms.comIf you wish to participate in any of our upcoming webinars, please complete the registration form below. Those registering for 4 or more webinars will receive a 25% discount. Discounts are also available for groups of 5 or more. 010
Courageous Parents Network @courageousparentsnetwork.org · 11/03/2025Healthcare advance directives can support a family's goals and wishes. Join Founders of Advance Conversations IN THE ROOM on 3/24 at 8 p.m. ET Register: courageousparentsnetwork.org/events/suppo... #advancedirective #pedpc 000
Courageous Parents Network @courageousparentsnetwork.org · 21/02/2025Today we recognize the strength and love of #caregivers. 000
Courageous Parents Network @courageousparentsnetwork.org · 20/02/2025NOMINATIONS FOR THE CPN COURAGEOUS PROVIDER AWARD 2025 ARE NOW OPEN! The deadline for submissions is Wednesday, April 30, 2025 at 5 pm ET. You can find instructions and a simple form to complete here: courageousparentsnetwork.org/pages/the-co... #pedpccourageousparentsnetwork.orgThe 2025 Courageous Provider Award: Nominations are OPEN!The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees 000
Reposted by Courageous Parents NetworkUMass Chan Medical School @umasschan.bsky.social · 10/02/2025🎧 Now streaming: Rare Diseases, Real Stories, a podcast that shines a spotlight on families affected by rare diseases: direc.to/msP4 #RareDiseasesRealStories #RareDiseases #podcast #RareDiseaseMonth @courageousparentsnetwork.org @blugenesfdn.bsky.social @globalgenes.bsky.social 032
Courageous Parents Network @courageousparentsnetwork.org · 13/02/2025We know the impact caring for a child with a serious illness can have on relationships. So we want to know... How do you tend to your relationships? What works? What doesn't work? What do you worry about? How do you keep it going? Tell us in ONE word. #pedpc #rare #caregiver 010
Courageous Parents Network @courageousparentsnetwork.org · 11/02/2025CPN is proud to be an official liaison to the American Academy of Pediatrics Section for Hospice & Palliative Medicine. Bringing peds experts & caregivers together is an essential part of improving the pediatric healthcare experience & fostering an understanding of clinician & caregiver perspectives 010
Courageous Parents Network @courageousparentsnetwork.org · 10/02/2025CPN’s Blyth and Jennifer teamed up for an appearance on the newly released podcast, Rare Diseases, Real Stories, brought to us by the team at @umasschan.bsky.social. www.umassmed.edu/news/raredis... #RareDiseases #podcast #RareDiseasesRealStoriesumassmed.eduCourageous Parents NetworkCourageous Parents Network 010
Courageous Parents Network @courageousparentsnetwork.org · 07/02/2025This webinar from @pedpalcc.bsky.social will highlight the role of integrated behavioral health on a pediatric palliative care team and the applications/implications for a pediatric palliative care social work practice. Register: tfaforms.com/4842636 #pedpc #PPCtfaforms.comIf you wish to participate in any of our upcoming webinars, please complete the registration form below. Those registering for 4 or more webinars will receive a 25% discount. Discounts are also available for groups of 5 or more. 011
Courageous Parents Network @courageousparentsnetwork.org · 03/02/2025Check out ehospicenews for a piece written by #caregiver Amy, #pedpc physician Erin, and CPN about pediatric palliative care for #childhoodcancer and our guide to help parents and clinicians understand how it can help. ehospice.com/inter_childr...ehospice.comImproving Care for Children with Cancer with Paediatric Palliative CareIt’s that time of year for New Year’s resolutions. People everywhere will make commitments to better their lives in some way. Perhaps you are working on imp 000
Courageous Parents Network @courageousparentsnetwork.org · 30/01/2025Join Dr. Monica Lemmon and experienced #NICU parents to learn strategies for building helpful parent-clinician alliances and parental confidence in decision-making for newborns in the NICU. Join us on Thursday, February 27th, at 8:00 pm EST courageousparentsnetwork.org/events/being...courageousparentsnetwork.orgBeing My Child's Protector, Advocate, and Decision-Maker in the NICU<p>Anticipating the birth of a child can be one of the happiest times for parents. But when babies h 000
Courageous Parents Network @courageousparentsnetwork.org · 18/01/2025Exciting opportunity to work with Courageous Parents Network by becoming a Parent Champion. Applications are due 2/15. Find out more: courageousparentsnetwork.org/pages/parent...courageousparentsnetwork.orgParent Champion Application Guidelines 2025CPN originated in the personal story of a rare disease mom, and now bereaved parent, who began advocating for pediatric palliative care and the needs of familie 000
Courageous Parents Network @courageousparentsnetwork.org · 16/01/2025Parents of children with life-limiting illnesses naturally worry about the siblings. Join us IN THE ROOM with Dr. Wendy Plante to explore common sibling challenges, AND strengths and learn about resources to help siblings feel supported. courageousparentsnetwork.org/events/suppo... #siblings #pedpccourageousparentsnetwork.orgSupporting and Celebrating the Siblings<p>From the time that their sibling is diagnosed with a serious illness, the other children will nee 010
Courageous Parents Network @courageousparentsnetwork.org · 14/01/2025"The best providers were those who didn’t just talk AT my parents but instead invited them into the conversation." Read more: courageousparentsnetwork.org/blog/bridgin... #NP #blog #pedpc #cerebralpalseycourageousparentsnetwork.orgBridging the Gap in Complex Conversations: A Personal and Professional JourneyA nurse who lives with medical complexity knows firsthand how daunting medical conversations can be but notes that when handled with care, they can be transformative. 000
Courageous Parents Network @courageousparentsnetwork.org · 13/01/2025Words have the power to embrace and validate but equally the capacity to cause harm and hurt. In this blog, Jessica explores her relationship with words. Read it and share your thoughts on how words matter in your world! #MERRF #diagnosis courageousparentsnetwork.org/blog/words-m...courageousparentsnetwork.orgWords MatterI’ve always believed in the power of words. When my daughter was diagnosed with MERRF Syndrome, I parsed every word the doctors said. But for the first time in my life, the words made everything feel ... 000
Courageous Parents Network @courageousparentsnetwork.org · 03/01/2025Kicking off 2025 strong! In 2024, CPN staff presented 106 times. Most of these presentations are done at no cost to organizations or professional groups. Your gift makes them possible. Donate: www.every.org/courageous-p... #pedpc #neurojourney 020