Providers-Come learn about Child Neurology Foundation's Family Support Program & NeuroJourney.org, CPN's anticipatory guidance tool for families caring for children with #SNI . Both will enhance your practice!
Register: courageousparentsnetwork.org/events/come-le…
#SevereNeurologicalImpairment #Neurology

It is not uncommon for families of children with medical complexity to experience a shift in their circle of friends.
#MedicalComplexity
#RareDisease
#Caregivers
#SupportCircle

We are happy to have Chrissy Salley, PhD representing CPN at the annual Society of Pediatric Psychology conference!

#SPPAC2024 attendees! I am in front of 8 block bar if you are interested in stopping by and learning about Courageous Parents Network and our resources to help families. #thisispedpsych Courageous Parents

The Undiagnosed Diseases Network Foundation's (Undiagnosed Diseases Network Foundation (UDNF)) mission is to improve access to #diagnosis , #research , and #care for all individuals with #undiagnosed and #ultrarare conditions.
bit.ly/4aOlsjV

I love seeing Courageous Parents materials out in the wild! Thank you SPP Palliative Care and End of Life SIG for sharing.

Siblings sometimes struggle with how to talk with friends about their #MedicallyComplex brother or sister.
#RareSiblings
#SiblingSupport
#Siblings

CPN is working with Kim Mooney-Doyle, PhD, RN, CPNP-AC & Assistant Professor in the Dept of Family & Community Health at the UMD to conduct a study with sibs & parents to understand their experiences around family communication. Learn more about the study:
bit.ly/4aLAG8A

We’re excited to partner with Child Neurology Foundation to conduct a survey thru 5/3 to understand the journey of caring for children with #NeurologicConditions . bit.ly/3TZg0n4
#ChildNeurology #CNF

#Caregivers of #MedicallyComplex children need their friends to recognize how unpredictable their world is and be patient when plans change.
#MedicallyComplex Parenting
#mitochondrialdisease

It is #NationalSiblingDay . The diagnosis of a brother or sister will be a defining moment in the life of a #sibling . In her first piece as Blogger in Residence, Molly's words truly capture the sibling experience.
Read: bit.ly/3vOuy0G
#RareSiblings
#Cancer

Discover the power of children's #books to help young people understand #death and #loss . REGISTER: bit.ly/3J6nz6p
#teachers
#libraries
#caregivers
#pedpc
#parenting
#grief
#bereavement

Studies have shown that even very young children who are #seriouslyill think about death—even if no one is talking about it. If a child is cognitively capable of talking about their own wishes, it can be a gift to all to have these conversations together.
bit.ly/3TXxbGF

Children’s literature can offer a gentle and developmentally appropriate way to address complex topics – such as #death and #grief – with children. Join us In The Room on April 11th.
Register: bit.ly/3J1QB6S
#Pedpc #RareDisease #Caregiver #MedicallyComplex

'As with most types of death, perinatal loss is not spoken about openly. It goes against our expectations. Parents should not have to bury their children. Yet, it is a painful truth for thousands of families every year.' Frances McCarthy, MS, RNC-NIC, CPLC
bit.ly/43FMhUy

#RareDisease
#CareAboutRare
#RareSiblings

Caregivers of children with serious medical conditions uniquely understand living in the present.
#Trisomy18
#TrisomyAwarenessMonth
#Pedpc
#Trisomy21
#trisomy13
#CompatibleWithLife

Join us In the Room tonight at 8 pm ET for a conversation about work, in or out of the home, while caregiving. REGISTER: bit.ly/3v25kM1
#parentcaregiver
#caregiver

Join us for a discussion with Myra Sack, author of Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way. This memoir honors Myra’s daughter Havi and chronicles their journey helping her live and die.
bit.ly/3TnBBoN
#Ritual #Diagnosis #Grief #PalliativeCare

In her most recent #blog , Jessica discusses the many reasons why she continued to #work after her daughter Dalia's diagnosis. Read: bit.ly/3x03RXe
Join a panel of parents on 3/19 at 8pm ET to explore the many facets of work
Register: bit.ly/3PmPNwZ
#Caregiver