Courageous Parents Network

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.

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

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...

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...

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!

Parent Perspectives: Insights into Medical Decision-Making <p>Making major decisions about interventions such as feeding tubes or tracheostomies is one of the

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...

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.

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-...

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

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

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...

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.

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

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

Today we recognize the strength and love of #caregivers.

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

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

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

🎧 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

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

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

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

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.

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

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

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...

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

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...

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

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...

Supporting and Celebrating the Siblings <p>From the time that their sibling is diagnosed with a serious illness, the other children will nee

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

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.

"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

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 ...

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...

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