One of my kiddos has Spina Bifida Myelomeningocele and is at high risk for kidney damage.
I'm asking you as a mom to please help Bobby.
I'm asking you as a mom to please help Bobby.
🎃 We need to raise another $435 by Halloween for Bobby's
GoFundMe campaign to save his kidneys -- he's waiting for his next procedure nearby Ronald Reagan Hospital at UCLA!
We have to help because Trump has made healthcare impossible for him!
Can you chip in $5, $10, $20 or more?
Click below:
GoFundMe campaign to save his kidneys -- he's waiting for his next procedure nearby Ronald Reagan Hospital at UCLA!
We have to help because Trump has made healthcare impossible for him!
Can you chip in $5, $10, $20 or more?
Click below:
October 31, 2025 at 9:14 PM
One of my kiddos has Spina Bifida Myelomeningocele and is at high risk for kidney damage.
I'm asking you as a mom to please help Bobby.
I'm asking you as a mom to please help Bobby.
𝐈'𝐦 𝐓𝐲𝐫𝐞𝐬𝐞 𝐚𝐧𝐝 𝐈 𝐚𝐦 𝐚 𝐩𝐫𝐨𝐮𝐝 𝐒𝐩𝐢𝐧𝐚 𝐁𝐢𝐟𝐢𝐝𝐚 𝐰𝐚𝐫𝐫𝐢𝐨𝐫!💪🏾💛🎗️ #disabilitypridemonth #spinabifidawarrior #spinabifidaawareness #myelomeningocele #GodDoesntMakeMistakes #IAmUnstoppable #overcomer #selflove #positivevibes
July 23, 2025 at 2:22 AM
𝐈'𝐦 𝐓𝐲𝐫𝐞𝐬𝐞 𝐚𝐧𝐝 𝐈 𝐚𝐦 𝐚 𝐩𝐫𝐨𝐮𝐝 𝐒𝐩𝐢𝐧𝐚 𝐁𝐢𝐟𝐢𝐝𝐚 𝐰𝐚𝐫𝐫𝐢𝐨𝐫!💪🏾💛🎗️ #disabilitypridemonth #spinabifidawarrior #spinabifidaawareness #myelomeningocele #GodDoesntMakeMistakes #IAmUnstoppable #overcomer #selflove #positivevibes
About to take C in for an MRI of her brain and spine. Some new issues have us concerned that her spinal cord may be tethered to the scar tissue from her myelomeningocele closure in infancy. This might mean surgery if so.
September 29, 2024 at 2:17 PM
About to take C in for an MRI of her brain and spine. Some new issues have us concerned that her spinal cord may be tethered to the scar tissue from her myelomeningocele closure in infancy. This might mean surgery if so.
The point of these mandated additives is that they, for free, provide essential vitamins and minerals to all that would otherwise cost money. When you put means testing on things like folic acid, you get kids w/ spina bifida. WaPo should show what folic acid prevents, instead of pics of tortillas.
January 11, 2026 at 2:56 PM
The point of these mandated additives is that they, for free, provide essential vitamins and minerals to all that would otherwise cost money. When you put means testing on things like folic acid, you get kids w/ spina bifida. WaPo should show what folic acid prevents, instead of pics of tortillas.
Partially paralyzed, born with:
Hydrocephalus
Spina Bifida Myelomeningocele,
Clubbed Feet, and
Scoliosis.
As a "genuinely disabled" person, I say:
HEALTH CARE FOR ALL. NOT JUST ME.
Hydrocephalus
Spina Bifida Myelomeningocele,
Clubbed Feet, and
Scoliosis.
As a "genuinely disabled" person, I say:
HEALTH CARE FOR ALL. NOT JUST ME.
Republicans keep saying the “genuinely disabled” don’t have to worry about losing Medicaid.
All disabilities are genuine.
You also need healthcare to get a diagnosis. To get the paperwork done. To “prove it”.
They’re ensuring people get trapped in red tape loopholes so they can’t get care.
All disabilities are genuine.
You also need healthcare to get a diagnosis. To get the paperwork done. To “prove it”.
They’re ensuring people get trapped in red tape loopholes so they can’t get care.
July 4, 2025 at 7:26 PM
Partially paralyzed, born with:
Hydrocephalus
Spina Bifida Myelomeningocele,
Clubbed Feet, and
Scoliosis.
As a "genuinely disabled" person, I say:
HEALTH CARE FOR ALL. NOT JUST ME.
Hydrocephalus
Spina Bifida Myelomeningocele,
Clubbed Feet, and
Scoliosis.
As a "genuinely disabled" person, I say:
HEALTH CARE FOR ALL. NOT JUST ME.
Jon sent me this flashback to his post the morning after I extubated myself in the ICU because I am apparently immune to Propofol (yes the MJ drug). I immediately began demanding food, because I am forever myself.
April 2, 2024 at 6:17 PM
Jon sent me this flashback to his post the morning after I extubated myself in the ICU because I am apparently immune to Propofol (yes the MJ drug). I immediately began demanding food, because I am forever myself.
Types of Spina Bifida include:
Myelomeningocele (milo-my-ninja-seal)
Meningocele (my-ninja-seal)
Lipomeningocele (lie-po-my-ninja-seal)
Spina bifida occulta (oh-cull-tah)
Open spina bifida, e.g. myelomeningocele, requires surgery to close the opening.
Myelomeningocele (milo-my-ninja-seal)
Meningocele (my-ninja-seal)
Lipomeningocele (lie-po-my-ninja-seal)
Spina bifida occulta (oh-cull-tah)
Open spina bifida, e.g. myelomeningocele, requires surgery to close the opening.
June 1, 2026 at 10:30 PM
Types of Spina Bifida include:
Myelomeningocele (milo-my-ninja-seal)
Meningocele (my-ninja-seal)
Lipomeningocele (lie-po-my-ninja-seal)
Spina bifida occulta (oh-cull-tah)
Open spina bifida, e.g. myelomeningocele, requires surgery to close the opening.
Myelomeningocele (milo-my-ninja-seal)
Meningocele (my-ninja-seal)
Lipomeningocele (lie-po-my-ninja-seal)
Spina bifida occulta (oh-cull-tah)
Open spina bifida, e.g. myelomeningocele, requires surgery to close the opening.
Feasibility and safety of cellular therapy for in-utero repair of myelomeningocele (CuRe Trial): a first-in-human, phase 1, single-arm study - The Lancet www.thelancet.com/journals/lan...
Feasibility and safety of cellular therapy for in-utero repair of myelomeningocele (CuRe Trial): a first-in-human, phase 1, single-arm study
This first-in-human treatment consisting of allogeneic, live stem cells showed no
cell-related adverse effects. The therapy was assessed as sufficiently safe to proceed
with non-staggered enrolment of...
www.thelancet.com
February 27, 2026 at 7:06 PM
Feasibility and safety of cellular therapy for in-utero repair of myelomeningocele (CuRe Trial): a first-in-human, phase 1, single-arm study - The Lancet www.thelancet.com/journals/lan...
Anytime, Phil.
BTW, Laurita is a force of nature.
She has Spina Bifida Myelomeningocele, and has a blog with a worldwide following.
She got us through so many hospitalizations of my youngest son, who also has Spina Bifida Myelomeningocele.
BTW, Laurita is a force of nature.
She has Spina Bifida Myelomeningocele, and has a blog with a worldwide following.
She got us through so many hospitalizations of my youngest son, who also has Spina Bifida Myelomeningocele.
July 13, 2025 at 11:20 PM
Anytime, Phil.
BTW, Laurita is a force of nature.
She has Spina Bifida Myelomeningocele, and has a blog with a worldwide following.
She got us through so many hospitalizations of my youngest son, who also has Spina Bifida Myelomeningocele.
BTW, Laurita is a force of nature.
She has Spina Bifida Myelomeningocele, and has a blog with a worldwide following.
She got us through so many hospitalizations of my youngest son, who also has Spina Bifida Myelomeningocele.
Molecular insights into myelomeningocele via proteomic analysis of amniotic fluid #JProteomics #MassSpec www.sciencedirect.com/science/arti...
Molecular insights into myelomeningocele via proteomic analysis of amniotic fluid
Despite numerous studies on fetal therapy for myelomeningoceles (MMC), the pathophysiology of this malformation remains poorly understood.This study a…
www.sciencedirect.com
January 6, 2025 at 9:25 AM
Molecular insights into myelomeningocele via proteomic analysis of amniotic fluid #JProteomics #MassSpec www.sciencedirect.com/science/arti...
A retrospective cohort study examines neurodevelopmental outcomes following fetoscopic myelomeningocele repair in the Journal of Pediatrics buff.ly/4xRSBFv
#EBNEOalerts #neoEBM #neobluesky
#EBNEOalerts #neoEBM #neobluesky
March 20, 2025 at 7:48 PM
A retrospective cohort study examines neurodevelopmental outcomes following fetoscopic myelomeningocele repair in the Journal of Pediatrics buff.ly/4xRSBFv
#EBNEOalerts #neoEBM #neobluesky
#EBNEOalerts #neoEBM #neobluesky
Brain Gods
But I remain grateful to the ones who closed my kid’s myelomeningocele and installed her no complications at age 14 shunt.
But I remain grateful to the ones who closed my kid’s myelomeningocele and installed her no complications at age 14 shunt.
January 29, 2026 at 7:03 AM
Brain Gods
But I remain grateful to the ones who closed my kid’s myelomeningocele and installed her no complications at age 14 shunt.
But I remain grateful to the ones who closed my kid’s myelomeningocele and installed her no complications at age 14 shunt.
A Phase I trial combining stem cell therapy with fetal surgery for spina bifida demonstrated safety and intact spinal repairs in all six infants, with no serious adverse effects observed.
First-ever in-utero stem cell therapy for fetal spina bifida repair shows safe results
A Phase I clinical trial published in The Lancet has shown that combining stem cell therapy with standard fetal surgery before birth is a safe and promising approach to treat myelomeningocele, a severe form of spina bifida.
medicalxpress.com
February 26, 2026 at 11:30 PM
A Phase I trial combining stem cell therapy with fetal surgery for spina bifida demonstrated safety and intact spinal repairs in all six infants, with no serious adverse effects observed.
🫂🫂🫂 Bunny, and it's what it is 🤷🏻♀️
My biggest issue is that I wasn't warned about upper body issues with my Spina Bifida/Myelomeningocele. It was always "take care of your lower body, but overcompensate with your arms..." 🙄
I'm still here, so 👍👍👍👍😃😃😃😃😃
My biggest issue is that I wasn't warned about upper body issues with my Spina Bifida/Myelomeningocele. It was always "take care of your lower body, but overcompensate with your arms..." 🙄
I'm still here, so 👍👍👍👍😃😃😃😃😃
August 22, 2025 at 5:26 AM
🫂🫂🫂 Bunny, and it's what it is 🤷🏻♀️
My biggest issue is that I wasn't warned about upper body issues with my Spina Bifida/Myelomeningocele. It was always "take care of your lower body, but overcompensate with your arms..." 🙄
I'm still here, so 👍👍👍👍😃😃😃😃😃
My biggest issue is that I wasn't warned about upper body issues with my Spina Bifida/Myelomeningocele. It was always "take care of your lower body, but overcompensate with your arms..." 🙄
I'm still here, so 👍👍👍👍😃😃😃😃😃
Check out our #FetalTherapy Focus Group's newest publication describing current neo antibiotic use practices following fMMC repair bit.ly/46L1INV
#CHNCFocusGroup #fetaltherapy #neonatology #myelomeningocele
#CHNCFocusGroup #fetaltherapy #neonatology #myelomeningocele
February 16, 2026 at 5:38 PM
Check out our #FetalTherapy Focus Group's newest publication describing current neo antibiotic use practices following fMMC repair bit.ly/46L1INV
#CHNCFocusGroup #fetaltherapy #neonatology #myelomeningocele
#CHNCFocusGroup #fetaltherapy #neonatology #myelomeningocele
In-utero treatment of myelomeningocele, the most severe form of spina bifida, with allogeneic, live stem cells was feasible and safe, a first in-human, phase I, single-arm study indicated.
https://www.medpagetoday.com/pediatrics/generalpediatrics/120071
https://www.medpagetoday.com/pediatrics/generalpediatrics/120071
In-Utero Repair of Severe Spina Bifida With Stem Cells Shows Promise
A first in-human, phase I trial examined feasibility as well as safety
www.medpagetoday.com
March 1, 2026 at 8:05 PM
In-utero treatment of myelomeningocele, the most severe form of spina bifida, with allogeneic, live stem cells was feasible and safe, a first in-human, phase I, single-arm study indicated.
https://www.medpagetoday.com/pediatrics/generalpediatrics/120071
https://www.medpagetoday.com/pediatrics/generalpediatrics/120071
Oof, same. Ours is spina bifida. My sister has occulta, my cousin had myelomeningocele. Cousin lived a short, neglected life in a care facility that forcibly sterilised her via hysterectomy. She had intellectual disability and paraplegia from birth. And she was a wonderful human who deserved better.
October 21, 2023 at 9:11 AM
Oof, same. Ours is spina bifida. My sister has occulta, my cousin had myelomeningocele. Cousin lived a short, neglected life in a care facility that forcibly sterilised her via hysterectomy. She had intellectual disability and paraplegia from birth. And she was a wonderful human who deserved better.
Aмериканские врачи провели исследование, в котором детей с миеломенингоцеле не просто прооперировали в матке, но еще и нанесли на поврежденный спинной мозг мезенхимальные стволовые клетки
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
Внутриутробная стволовая терапия помогла при расщеплении позвоночника
N + 1 — главное издание о науке, технике и технологиях
nplus1.ru
March 3, 2026 at 2:00 PM
Aмериканские врачи провели исследование, в котором детей с миеломенингоцеле не просто прооперировали в матке, но еще и нанесли на поврежденный спинной мозг мезенхимальные стволовые клетки
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
Aмериканские врачи провели исследование, в котором детей с миеломенингоцеле не просто прооперировали в матке, но еще и нанесли на поврежденный спинной мозг мезенхимальные стволовые клетки
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
#главноезанеделю
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
#главноезанеделю
Внутриутробная стволовая терапия помогла при расщеплении позвоночника
N + 1 — главное издание о науке, технике и технологиях
nplus1.ru
March 8, 2026 at 8:15 AM
Aмериканские врачи провели исследование, в котором детей с миеломенингоцеле не просто прооперировали в матке, но еще и нанесли на поврежденный спинной мозг мезенхимальные стволовые клетки
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
#главноезанеделю
https://nplus1.ru/news/2026/03/03/cellular-therapy-myelomeningocele
#главноезанеделю