Courageous Parents

@melissacousino @StanfordQoLA @stanfordpedcard @CourageousCPN @justinnbaker I am also really looking to being with everyone and contributing and learning and channeling all I have learned from families.

via @NYTimes yup!!!!!! nytimes.com/2024/05/27/us/…

How is this possible? IT is NUTS!! This texas change would negate the VALUE of the home nurse (if you have one!) .... so a parent can go out (for self, with siblings, for anything). texastribune.org/2024/04/19/tex…

@OnceUponAGene This is really well evoked and depicted Effie!

Many have attempted 2 illustrate the journey a fam undergoes when seeking a #genetictest that may lead 3 a #Raredisease dx, often these depictions fall short of capturing the true essence of the experience. I aim 2 provide a more accurate & factual representation of this journey

@PediPal I love all of your conversations and this is one of my favorites - as you might imagine. With CPN's NeuroJourney, which both Lauren and Marina contributed to as editors; and Julie co-authored. I love how these two MDs center the child and family, not the prognosis.

"Episode 34: Prognosticaution" is up at pedipal.org! Sarah and Dan discuss the dreaded uncertainty of neurologic prognosis with Marina Ma and Lauren Treat. (And in case you missed Episode 33, we'd recommend checking that one out, too. Julie Hauer is in it!)

@KFILE Andy - our daughter Cameron's nurses gave us a dogwood tree after she died. It is 23 years high. It blooms beautifully and pricks our eyes and hearts every spring. I am glad you have a tree. xo

I often find solace in watching Beans’ memorial tree grow. Its branches seem to reach towards the sky and reminds me of the resilience we've found in the face of her loss. Though her time with us was tragically short, her spirit lives on in the delicate blossoms. Watching it grow, I’m reminded of both the pain of her absence and the beauty of her existence. It's a bittersweet experience—one filled with such longing and sorrow, but also with gratitude for the time we had with her, however fleeting. We’re approaching what would have been her 4th birthday and will have more to share about the fundraising we’ve done for childhood cancer in her memory soon.

Clinicians - diid you miss yesterday's NeuroJourney demo session? No worries, we are hosting another session on Thursday 1/11 at 11 am ET Register: bit.ly/3SbKp1G #NeuroJourney #SNI #Learn

Shared NeuroJourney and CPN with 30 1st year med students at @UMassMedSchool, who are in the SideKicks program and Complex Care special interest group. These kids are their interest. This video, mom Naomi, sure got them thinking! courageousparentsnetwork.org/videos/the-mot…

via @NYTOpinion An important piece at the beginning of this new (election) year. So glad she wrote it and that this was her family’s experience. It makes the case for families with loved ones of any age who need home care. nytimes.com/2024/01/01/opi…

@CourageousCPN @KenPituch @MottChildren Check out this video of @KenPituch 's gracious remarks: youtu.be/3wjQNWp-MbU

Congratulations @KenPituch! We can't wait to hear all of the wonderful stories @BlythCPN brings back from @MottChildren and their pediatric palliative care team. #pedpc

Two fun visits for me. A rich day at Mott Children’s with Drs Pituch and Keefer and a quick visit this morning with Dr Temonti in Detroit. CPN road trip!

What a treat for me!!!!!! Love the Avengers theme here too. Coming to speak to Peds Residents and then give the 2023 Courageous Provider Award to Dr Ken Pituch. @CourageousCPN

The families at Mott’s are lucky to have M-COPE. Coping coping coping… can there ever be enough support to help us cope?

Listen to James Robinson, whose son Nadav was born with a congenital heart defect and lived 5 bright brave years. His book is the opposite of a tragedy. It reminds us of the power of parent love and is for anyone seeking hope and light. @MoreThanAMemoir courageousparentsnetwork.org/events/more-th…

CPN is so fortunate to have a parent with Parvathy's depth and breadth of experience as a Champion. She's also a fun, optimistic presence. xo

@CourageousCPN As both ED of @CourageousCPN and a trustree of the Cameron and Hayden Lord Foundation, I am excited and hopeful about this. And so appreciative for the time and talents that brought it here. You know who you are.

This is a significant milestone for the integration of Pediatric Palliative Care into the mainstream of hospice and palliative care. Just in time for Thanksgiving, the children have a seat at the grown up table!  #pedpc #hapc

Parent Champion Lindsey is transforming care for children like Owen and their families in Washington State. Woot!

I have really appreciated this conversation about the impact of structural historical racism in US on health outcomes. ⁦ podcasts.apple.com/us/podcast/kel…