Lillian Isabella
@lillianisabella.com
Pinned
Lillian Isabella
@lillianisabella.com
· Apr 24
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening
Reposted by Lillian Isabella
11 Great Books for Juneteenth Reading! A list of my favorites that educate + inspire. jjbrownauthor.com/11-great-boo... #booksky #writingcommunity #books #booklist #juneteenth
J.J.Brown Author - 11 Great Books for Juneteenth Reading
To celebrate Juneteenth add these 11 great books by African American and Black authors to your reading list! Juneteenth celebrates Black excellence, and part of the celebration is honoring great au…
jjbrownauthor.com
June 19, 2025 at 2:23 PM
11 Great Books for Juneteenth Reading! A list of my favorites that educate + inspire. jjbrownauthor.com/11-great-boo... #booksky #writingcommunity #books #booklist #juneteenth
Reposted by Lillian Isabella
Happy International PKU Day! “Hope is a waking dream.” – Aristotle / Access to care is something to work on + hope for in order to realize our shared, waking dream. For many of us + families like mine with #PKU. Read my column to mark the day here -> jjbrownauthor.com/internationa... #IPKUDay2025
J.J.Brown Author - International PKU Day 2025: Hopes and Dreams With PKU in the Family
“Hope is a waking dream.” – Aristotle International PKU Day 2025, I’m reflecting how my hopes and dreams for what follows after a healthcare system reports the baby is “not OK”, …
jjbrownauthor.com
June 28, 2025 at 8:56 PM
Happy International PKU Day! “Hope is a waking dream.” – Aristotle / Access to care is something to work on + hope for in order to realize our shared, waking dream. For many of us + families like mine with #PKU. Read my column to mark the day here -> jjbrownauthor.com/internationa... #IPKUDay2025
Reposted by Lillian Isabella
Rare Creatives Lives: Advocacy & Artists - Can't have a fire without a spark... www.youtube.com/watch?v=3S4i... Fellow artists @kevinalexander-pku.bsky.social, Pauline O'Connor, Kurt Sensenbrenner and @lillianisabella.com in the #raredisease community inspired my advocacy. Who inspires yours?
Rare Creatives' Lives: Advocacy & Artists
YouTube video by J.J. Brown Books
www.youtube.com
June 11, 2025 at 5:04 PM
Rare Creatives Lives: Advocacy & Artists - Can't have a fire without a spark... www.youtube.com/watch?v=3S4i... Fellow artists @kevinalexander-pku.bsky.social, Pauline O'Connor, Kurt Sensenbrenner and @lillianisabella.com in the #raredisease community inspired my advocacy. Who inspires yours?
Reposted by Lillian Isabella
Check out this OpEd written my my daughter @lillianisabella.com, whose rare health condition PKU was picked up 9 days after newborn screening in NY. She's more than an advocate on #raredisease, she has one. #PKU.
May 3, 2025 at 3:03 PM
Check out this OpEd written my my daughter @lillianisabella.com, whose rare health condition PKU was picked up 9 days after newborn screening in NY. She's more than an advocate on #raredisease, she has one. #PKU.
Reposted by Lillian Isabella
"Without the committee, we have a gaping hole where a collective of leaders once championed for newborn health," - #PKU advocate Lillian Isabella.
#NewbornScreening saves lives. Cutting the committee responsible for #RUSP was a mistake.
Read more in @statnews.com: www.statnews.com/2025/04/24/a...
#NewbornScreening saves lives. Cutting the committee responsible for #RUSP was a mistake.
Read more in @statnews.com: www.statnews.com/2025/04/24/a...
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 24, 2025 at 9:06 PM
"Without the committee, we have a gaping hole where a collective of leaders once championed for newborn health," - #PKU advocate Lillian Isabella.
#NewbornScreening saves lives. Cutting the committee responsible for #RUSP was a mistake.
Read more in @statnews.com: www.statnews.com/2025/04/24/a...
#NewbornScreening saves lives. Cutting the committee responsible for #RUSP was a mistake.
Read more in @statnews.com: www.statnews.com/2025/04/24/a...
Reposted by Lillian Isabella
Maternal Mortality is getting worse--it doesn't have to be that way. open.substack.com/pub/sharonbu...
April 28, 2025 at 10:56 AM
Maternal Mortality is getting worse--it doesn't have to be that way. open.substack.com/pub/sharonbu...
Reposted by Lillian Isabella
Childbirth can be the most special of times for a family, but risks of a US mom dying then are up -> 27% higher in 2022 than 2018... at rates triple those of other high-income countries. My new column at @sharonbuchbinder.bsky.social site: sharonbuchbinder.substack.com/p/rising-mat... Please share!
April 28, 2025 at 9:44 PM
Childbirth can be the most special of times for a family, but risks of a US mom dying then are up -> 27% higher in 2022 than 2018... at rates triple those of other high-income countries. My new column at @sharonbuchbinder.bsky.social site: sharonbuchbinder.substack.com/p/rising-mat... Please share!
Reposted by Lillian Isabella
Loving Independent Bookstore Day today! 📚An author's dream to reach community members this way. I'm walking over to mine soon. #IndieBookstoreDay here's Bookshop.org's link to locate my new book - on becoming a mom & genetics - at a local indie near you: bookshop.org/p/books/when... #Booksky #books
When the Baby Is Not OK: Hopes & Genes
Hopes & Genes
bookshop.org
April 26, 2025 at 6:10 PM
Loving Independent Bookstore Day today! 📚An author's dream to reach community members this way. I'm walking over to mine soon. #IndieBookstoreDay here's Bookshop.org's link to locate my new book - on becoming a mom & genetics - at a local indie near you: bookshop.org/p/books/when... #Booksky #books
Reposted by Lillian Isabella
The ACHDNC provides essential guidance and expertise to help protect newborns from ~treatable~ disorders that would otherwise cause severe, debilitating outcomes, including death. Newborn screening saves newborns’ lives and futures.
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 24, 2025 at 8:59 PM
The ACHDNC provides essential guidance and expertise to help protect newborns from ~treatable~ disorders that would otherwise cause severe, debilitating outcomes, including death. Newborn screening saves newborns’ lives and futures.
Reposted by Lillian Isabella
"The volunteer committee advising on newborn screening must be reinstated!"- new on @statnews.com this morning, a strong opinion column by my daughter @lillianisabella.bsky.social Lillian Isabella, with the "why", she knows...she has the rare health condition #PKU. www.statnews.com/2025/04/24/a...
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 24, 2025 at 1:41 PM
"The volunteer committee advising on newborn screening must be reinstated!"- new on @statnews.com this morning, a strong opinion column by my daughter @lillianisabella.bsky.social Lillian Isabella, with the "why", she knows...she has the rare health condition #PKU. www.statnews.com/2025/04/24/a...
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 24, 2025 at 8:20 PM
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening