Courageous Parents Network

Graphic says Rare Diseases, Real Stories, a UMass Chan Medical School podcast, All episodes streaming now; graphic overlay says 2025 Top Stories

Catherine at her PT appointment

Jennifer Siedman and Blyth Taylor Lord

Jack Laidlaw and his parents

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

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...

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

Join CPN tonight at 8:00 PM ET!

Join CPN next Thursday In The Room!

Learn more and register: courageousparentsnetwork.org/events/you-c...

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

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

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...

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...

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...

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...

Where the CPN team will be this month!
#pedpc #NeuroJourney #Caregiver

CPN | Events Empowering parents and families of children living with serious illness. You are not alone.

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!

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...