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Courageous Parents Network

@courageousparentsnetwork.org
66 followers 63 following 34 posts

CPN is a nonprofit org established to help caregivers & others caring for children with serious medical conditions navigate the journey with support. courageousparentsnetwork.org

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Courageous Parents Network @courageousparentsnetwork.org · 15/04/2026
NOW 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...
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Reposted by Courageous Parents Network
UMass Chan Medical School @umasschan.bsky.social · 29/12/2025
UMass 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
Graphic says Rare Diseases, Real Stories, a UMass Chan Medical School podcast, All episodes streaming now; graphic overlay says 2025 Top StoriesCatherine at her PT appointmentJennifer Siedman and Blyth Taylor LordJack Laidlaw and his parents
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Courageous Parents Network @courageousparentsnetwork.org · 25/11/2025
Sometimes 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...
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Courageous Parents Network @courageousparentsnetwork.org · 17/11/2025
Courageous 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
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Courageous Parents Network @courageousparentsnetwork.org · 09/10/2025
Join CPN tonight at 8:00 PM ET!
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Courageous Parents Network @courageousparentsnetwork.org · 03/10/2025
Join CPN next Thursday In The Room! Learn more and register: courageousparentsnetwork.org/events/you-c...
courageousparentsnetwork.org
Upcoming: You Can Never Be Too Prepared: Pediatric Disaster and Emergency Preparedness – Courageous Parents Network
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Courageous Parents Network @courageousparentsnetwork.org · 25/09/2025
After 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
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Courageous Parents Network @courageousparentsnetwork.org · 10/09/2025
Pediatric 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.org
Improving the Pediatric Cancer Care Experience with Palliative Support
Palliative care offers invaluable support to children and their families, regardless of the prognosis, by focusing on enhancing quality of life while managing a
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Courageous Parents Network @courageousparentsnetwork.org · 08/09/2025
Are 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.org
Integrating Palliative Aware Care for Caregivers of Children Living with Serious Medical Conditions | Nexus Summit 2025
This 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...
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Courageous Parents Network @courageousparentsnetwork.org · 03/09/2025
Join #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.org
CAC2 Webinar: Improving the Pediatric Cancer Care Experience with Palliative Support - CAC2
In 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...
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Courageous Parents Network @courageousparentsnetwork.org · 02/09/2025
Where the CPN team will be this month! #pedpc #NeuroJourney #Caregiver
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Courageous Parents Network @courageousparentsnetwork.org · 09/08/2025
NEW! @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.ly
CPN | Events
Empowering parents and families of children living with serious illness. You are not alone.
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Reposted by Courageous Parents Network
CAPC @capcpalliative.bsky.social · 04/08/2025
We 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.
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Courageous Parents Network @courageousparentsnetwork.org · 25/06/2025
70% 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.org
Travel Guide
Traveling with a child with medical complexity can be challenging but with extra planning, a family vacation can be a memorable and enjoyable experience. Planni
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Courageous Parents Network @courageousparentsnetwork.org · 24/06/2025
Announcing 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...
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Courageous Parents Network @courageousparentsnetwork.org · 16/06/2025
Support 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!
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Courageous Parents Network @courageousparentsnetwork.org · 11/06/2025
Making 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.org
Parent Perspectives: Insights into Medical Decision-Making
<p>Making major decisions about interventions such as feeding tubes or tracheostomies is one of the
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Courageous Parents Network @courageousparentsnetwork.org · 21/05/2025
Every 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.org
Please Presume Competency
Every 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.
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Courageous Parents Network @courageousparentsnetwork.org · 06/04/2025
Dr. 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
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Courageous Parents Network @courageousparentsnetwork.org · 05/04/2025
At 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
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Courageous Parents Network @courageousparentsnetwork.org · 03/04/2025
CPN'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...
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Courageous Parents Network @courageousparentsnetwork.org · 13/03/2025
In 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/4842636
tfaforms.com
If 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.
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Courageous Parents Network @courageousparentsnetwork.org · 11/03/2025
Healthcare 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
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Courageous Parents Network @courageousparentsnetwork.org · 21/02/2025
Today we recognize the strength and love of #caregivers.
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Courageous Parents Network @courageousparentsnetwork.org · 20/02/2025
NOMINATIONS 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... #pedpc
courageousparentsnetwork.org
The 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
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Reposted by Courageous Parents Network
UMass 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
Graphic says Rare Diseases, Real Stories, a UMass Chan Medical School podcast. All episodes streaming now on umassmed.edu and wherever you get your podcasts
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Courageous Parents Network @courageousparentsnetwork.org · 13/02/2025
We 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
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Courageous Parents Network @courageousparentsnetwork.org · 11/02/2025
CPN 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
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Courageous Parents Network @courageousparentsnetwork.org · 10/02/2025
CPN’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 #RareDiseasesRealStories
umassmed.edu
Courageous Parents Network
Courageous Parents Network
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Courageous Parents Network @courageousparentsnetwork.org · 07/02/2025
This 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 #PPC
tfaforms.com
If 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.
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Courageous Parents Network @courageousparentsnetwork.org · 03/02/2025
Check 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.com
Improving Care for Children with Cancer with Paediatric Palliative Care
It’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
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Courageous Parents Network @courageousparentsnetwork.org · 30/01/2025
Join 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.org
Being 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
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Courageous Parents Network @courageousparentsnetwork.org · 18/01/2025
Exciting 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.org
Parent Champion Application Guidelines 2025
CPN 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
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Courageous Parents Network @courageousparentsnetwork.org · 16/01/2025
Parents 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 #pedpc
courageousparentsnetwork.org
Supporting and Celebrating the Siblings
<p>From the time that their sibling is diagnosed with a serious illness, the other children will nee
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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 #cerebralpalsey
courageousparentsnetwork.org
Bridging the Gap in Complex Conversations: A Personal and Professional Journey
A 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.
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Courageous Parents Network @courageousparentsnetwork.org · 13/01/2025
Words 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.org
Words Matter
I’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 ...
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Courageous Parents Network @courageousparentsnetwork.org · 03/01/2025
Kicking 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
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