When the Baby Is Not OK: Hopes & Genes – About the Book Geneticist’s Memoir of Pregnancy, Birth of Babies with Rare Disease Intimate journey navigates today’s most pressing women’s issues. When the Baby is Not OK: Hopes & Genes, a new memoir of preg…

Happy National PKU Awareness Day! My advocacy is sharing "When the Baby Is Not OK: Hopes & Genes" my memoir of having 2 daughters born with the rare health condition #phenylketonuria (PKU). More about the book: jjbrownauthor.com/books/when-t...
#PKUAwareness #PKUAwarenessDay #RareDisease #Momsky

Today is National #PKUAwarenessDay. APHL is proud to stand with the PKU community and advocate for early detection and lifesaving treatment. Newborn screening saves lives, and Kevin Alexander’s story shows why: buff.ly/kIPVF52

#PKUAwareness #NPKUA #Phenylketonuria

📓How storytelling relates to my rare disease journey + writing my latest book, "When the Baby Is Not OK: Hopes & Genes" www.youtube.com/watch?v=PzO3...
🎬 Clip from the roundtable with creatives who have PKU, now up in full on YouTube at "J.J. Brown Books"
#pku #raredisease #booksky #pkuawareness

We’ve been walking together this May for #MoveYourPheet, in support of the National PKU Alliance—raising awareness for PKU and connecting as a team. These moments remind us why our work matters. 💚

Learn more: secure.qgiv.com/event/moveyo...

#PKUAwareness #PKUAwarenessMonth #RareDisease

Fun convo on "Rare Creatives' Lives: Storytellers on Rare Disease in the Arts" - now up on Youtube here 🎧 : www.youtube.com/watch?v=miuz... #PKUAwareness #PKU #RareDisease #Booksky #Health #WritingCommunity Have a look + share with a friend to spark your art 📚📽️🎨... and maybe even activism!🔥

🎧 From Goddess to Villian: the emotional rollercoaster of parenting when the baby is not OK... A discussion on #eugenics, ethics + ♥️ empathy in healthcare for those of us with #raredisease in the family. #scicom expert Alexandra Howson 🎧 www.writemedicine.com/from-diagnos... #PKUAwareness #CME

"Write Medicine" podcast episode on empathy and ethics is up! From Diagnosis to Advocacy: What Rare Disease Teaches Us About CME. With host Alexandra Howson and guest, scientist author Jennifer J Brown..

🎧 Eugenics. 🙏 Ethics. ♥️ Empathy. What actual lived experiences of families with rare health conditions teach healthcare providers + writers. Interview by #scicom expert Dr. Alexandra Howson 🎧 up today! Please share -> www.writemedicine.com/from-diagnos... #RareDisease #PKUAwareness #CME #eugenics

Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts | LinkedIn Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts ~LinkedIn Live Event Celebrating PKU Awareness Month~ May 23, 2025 at 1PM ET Featuring Guest Creatives: Kevin Alexander (US), Producer...

Event Invite: Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts! May 23, 1PM ET on LinkedIn Live for #PKUAwareness Month. Producers, filmmakers, documentary makers, playwrights + authors who have phenylketonuria re: their own creative process. Join Us! www.linkedin.com/events/rarec...

It’s #PKUAwarenessMonth, and Alltrna is proud to support #MoveYourPheet, an event benefiting the National PKU Alliance. We’re walking together to raise awareness for PKU and the need for continued innovation in care.

Learn more: secure.qgiv.com/event/moveyo...

#PKUAwareness #RareDisease

#𝗗𝗬𝗞: There are about 400 rare genetic liver diseases? One of them is PKU, a genetic metabolic disorder that prevents the body from properly breaking down phenylalanine, an amino acid found in many foods.

Learn more about the condition: www.npkua.org/about-pku/

#RareDiseaseWeek #PKUAwareness