The kind folks at Rare Disease Day have shared Amelia’s #BattenDisease story, and you can read it at the link below!
Rare Disease Day is Feb. 28th and the more awareness we can spread, the better!
www.rarediseaseday.org/heroes/ameli...
Rare Disease Day is Feb. 28th and the more awareness we can spread, the better!
www.rarediseaseday.org/heroes/ameli...
Amelia, the CLN1 Warrior! - Rare Disease Day 2025
Our daughter, Amelia, was diagnosed with CLN1 Batten Disease (neuronal ceroid lipofuscinosis) at 2 years old. Batten Disease is a fatal, neurodegenerative disease with no… Continue reading Amelia, the...
www.rarediseaseday.org
January 23, 2025 at 1:15 AM
The kind folks at Rare Disease Day have shared Amelia’s #BattenDisease story, and you can read it at the link below!
Rare Disease Day is Feb. 28th and the more awareness we can spread, the better!
www.rarediseaseday.org/heroes/ameli...
Rare Disease Day is Feb. 28th and the more awareness we can spread, the better!
www.rarediseaseday.org/heroes/ameli...
Today is International Batten Disease Awareness Day. I lost my little sister, Caitlin, to the CLN2 strain of #BattenDisease in 2005. She was just 9 years old. If you would like to know more about this devastating, rare, neurodegenerative disease, please consider visiting www.bdfa-uk.org.uk
Thanks 🧡
Thanks 🧡
June 9, 2026 at 8:48 PM
Today is International Batten Disease Awareness Day. I lost my little sister, Caitlin, to the CLN2 strain of #BattenDisease in 2005. She was just 9 years old. If you would like to know more about this devastating, rare, neurodegenerative disease, please consider visiting www.bdfa-uk.org.uk
Thanks 🧡
Thanks 🧡
Our experts have developed a robust method of studying Batten disease, a rare form of childhood dementia.
Their work is helping to understand the disease, and is enabling testing and development of therapies.
#RareDiseaseDay #RareDisease #BattenDisease
edin.ac/4hKv8iT
Their work is helping to understand the disease, and is enabling testing and development of therapies.
#RareDiseaseDay #RareDisease #BattenDisease
edin.ac/4hKv8iT
February 28, 2025 at 9:25 AM
Our experts have developed a robust method of studying Batten disease, a rare form of childhood dementia.
Their work is helping to understand the disease, and is enabling testing and development of therapies.
#RareDiseaseDay #RareDisease #BattenDisease
edin.ac/4hKv8iT
Their work is helping to understand the disease, and is enabling testing and development of therapies.
#RareDiseaseDay #RareDisease #BattenDisease
edin.ac/4hKv8iT
Genome-based newborn screening identified CLN2 Batten disease before symptoms appeared, enabling early treatment and demonstrating the promise of genomic screening for treatable rare disorders. bit.ly/4y1a0fK #GIMO #CLN2 #BattenDisease #NewbornScreening #TPP1
August 26, 2026 at 1:52 AM
Genome-based newborn screening identified CLN2 Batten disease before symptoms appeared, enabling early treatment and demonstrating the promise of genomic screening for treatable rare disorders. bit.ly/4y1a0fK #GIMO #CLN2 #BattenDisease #NewbornScreening #TPP1
A year ago, we almost lost our Amelia after a bout of the flu put her on life support for 3 weeks. #BattenDisease families know time is short, but we weren’t ready to say goodbye. Thankfully, her lungs improved, though they’re clearly still diminished.
youtube.com/shorts/5lECk...
youtube.com/shorts/5lECk...
We Almost Lost Amelia a Year Ago | #battendisease #raredisease
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtube.com
January 28, 2025 at 10:22 PM
A year ago, we almost lost our Amelia after a bout of the flu put her on life support for 3 weeks. #BattenDisease families know time is short, but we weren’t ready to say goodbye. Thankfully, her lungs improved, though they’re clearly still diminished.
youtube.com/shorts/5lECk...
youtube.com/shorts/5lECk...
Would @darthbluesky.bsky.social be kind enough to share this call for advocacy? The form should be open until June 15th, so there’s still time to support #BattenDisease research!
Batten Disease Awareness Day is June 9th and you can help by being an advocate!
The BDSRA has a pre-filled message ready and all you need to do is fill out your info and it’ll send to your legislators.
Please help us save lives!
#BattenDay2024
advocacy.charityengine.net/Default.aspx...
The BDSRA has a pre-filled message ready and all you need to do is fill out your info and it’ll send to your legislators.
Please help us save lives!
#BattenDay2024
advocacy.charityengine.net/Default.aspx...
International Batten Awareness Day 2024
BDSRA Foundation | Powered by CharityEngine
advocacy.charityengine.net
June 11, 2024 at 11:27 PM
Would @darthbluesky.bsky.social be kind enough to share this call for advocacy? The form should be open until June 15th, so there’s still time to support #BattenDisease research!
New publication working with lead Tristan McKay studying iPSC models to elucidate new functions for the CLN7 protein and its role in Batten Disease (Neuronal Ceroid Lipofuscinosis). Well done Aseel Sharaireh et al. #BattenDisease #neuroscience #iPSC @natureportfolio.nature.com
rdcu.be/eNIwd
rdcu.be/eNIwd
November 2, 2025 at 11:34 PM
New publication working with lead Tristan McKay studying iPSC models to elucidate new functions for the CLN7 protein and its role in Batten Disease (Neuronal Ceroid Lipofuscinosis). Well done Aseel Sharaireh et al. #BattenDisease #neuroscience #iPSC @natureportfolio.nature.com
rdcu.be/eNIwd
rdcu.be/eNIwd
New video on Amelia’s YouTube channel all about her recent casting for new Ankle Foot Orthotics — fancy braces to help with neurological symptoms like spasticity.
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
youtube.com/shorts/e5FgM...
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
youtube.com/shorts/e5FgM...
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtube.com
September 13, 2024 at 11:19 PM
New video on Amelia’s YouTube channel all about her recent casting for new Ankle Foot Orthotics — fancy braces to help with neurological symptoms like spasticity.
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
youtube.com/shorts/e5FgM...
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
youtube.com/shorts/e5FgM...
Our latest video about our adventures with Amelia is now up! We masked up and toured the Washington State History Museum in Tacoma last week!
Creating Memories: Amelia’s Day at the Washington State History Museum #accessibility #battendisease
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtube.com
May 21, 2025 at 9:20 PM
Our latest video about our adventures with Amelia is now up! We masked up and toured the Washington State History Museum in Tacoma last week!
Nothing in life is guaranteed. You can buy all the Little Tikes toys you want, but if your child was born with a horrible, neurodegenerative condition like #BattenDisease, they might just sit in the yard unused.
My life advice: Cherish life. Oh, and fund rare disease research.
My life advice: Cherish life. Oh, and fund rare disease research.
If you’re over 30, quote this with some life advice 🤌🏼
May 10, 2025 at 7:07 PM
Nothing in life is guaranteed. You can buy all the Little Tikes toys you want, but if your child was born with a horrible, neurodegenerative condition like #BattenDisease, they might just sit in the yard unused.
My life advice: Cherish life. Oh, and fund rare disease research.
My life advice: Cherish life. Oh, and fund rare disease research.
"Charleigh is the only person in B.C. diagnosed w/ #CLN2 #BattenDisease, a rare genetic #neurodegenerative disorder that progressively robs children of their ability to see, speak, walk, and eventually swallow." 👉 Example of #Canada #Healthcare failing those who need the most help.
#raredisease
#raredisease
'Every day matters': Heartbroken B.C. mom urges government to restore drug funding for child with terminal brain disease
Despite a personal plea from family, the province has upheld its decision to stop funding Brineura for nine-year-old Charleigh Pollock.
vancouversun.com
July 6, 2025 at 5:57 PM
"Charleigh is the only person in B.C. diagnosed w/ #CLN2 #BattenDisease, a rare genetic #neurodegenerative disorder that progressively robs children of their ability to see, speak, walk, and eventually swallow." 👉 Example of #Canada #Healthcare failing those who need the most help.
#raredisease
#raredisease
Every Christmas with Amelia is special, and we love making memories with her. Case in point: A messy, but lovely gingerbread house she helped us decorate!
youtube.com/shorts/dIN98...
youtube.com/shorts/dIN98...
Christmas 2024: Amelia’s Gingerbread House #christmas #battendisease #gingerbread
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtube.com
December 24, 2024 at 5:18 PM
Every Christmas with Amelia is special, and we love making memories with her. Case in point: A messy, but lovely gingerbread house she helped us decorate!
youtube.com/shorts/dIN98...
youtube.com/shorts/dIN98...
Oct. 29th is Child Neurology Awareness Day and, naturally, our #NeuroChampion is our amazing Amelia.
#BattenDisease
#RareDisease
#BattenDisease
#RareDisease
October 30, 2023 at 5:28 AM
Oct. 29th is Child Neurology Awareness Day and, naturally, our #NeuroChampion is our amazing Amelia.
#BattenDisease
#RareDisease
#BattenDisease
#RareDisease
CLN3-related juvenile neuronal ceroid lipofuscinosis (JNCL), or Batten disease, is a rare autosomal recessive neurometabolic storage disorder. This article details how vacuolated lymphocytes are a key diagnostic biomarker for this disease.
bit.ly/cjo_vacuolat...
#Ophthalmology #BattenDisease
bit.ly/cjo_vacuolat...
#Ophthalmology #BattenDisease
Vacuolated lymphocytes: a diagnostic biomarker for CLN3-related Batten disease
CLN3-related juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease is a
rare (1 in 25,000 to 3 in 100 000 livebirths) autosomal recessive neurometabolic storage
disorder characterized by de...
bit.ly
September 8, 2025 at 2:37 PM
CLN3-related juvenile neuronal ceroid lipofuscinosis (JNCL), or Batten disease, is a rare autosomal recessive neurometabolic storage disorder. This article details how vacuolated lymphocytes are a key diagnostic biomarker for this disease.
bit.ly/cjo_vacuolat...
#Ophthalmology #BattenDisease
bit.ly/cjo_vacuolat...
#Ophthalmology #BattenDisease
Tom Wishart spoke at @edinunineuro.bsky.social #neuroday2025 this week on the use of large animal models for #biomarker discovery. Showcasing his work on #BattenDisease. #Research #NottinghamTrent
Delighted to have Tom Wishart from @roslininstitute.bsky.social (Nottingham Trent) discuss the ‘Utility of Large Animal Models for Biomarker Identification’
#neuroday2025 #biomarkers #research
#neuroday2025 #biomarkers #research
April 25, 2025 at 5:45 AM
Tom Wishart spoke at @edinunineuro.bsky.social #neuroday2025 this week on the use of large animal models for #biomarker discovery. Showcasing his work on #BattenDisease. #Research #NottinghamTrent
It is honestly staggering how much medication our 8-year-old needs to sleep comfortably some nights (melatonin PLUS a bunch of others).
I hate #BattenDisease so very much.
I hate #BattenDisease so very much.
May 12, 2025 at 11:37 PM
It is honestly staggering how much medication our 8-year-old needs to sleep comfortably some nights (melatonin PLUS a bunch of others).
I hate #BattenDisease so very much.
I hate #BattenDisease so very much.
Paradoxically, revisiting old photos of Amelia brings me both joy and anxiety. Of course, I cherish every second with her, but older photos often remind me of what #BattenDisease has cruelly stolen from her over the years. Still, this photo, taken 7 years ago, remains one of my favorites.
September 17, 2024 at 6:43 AM
Paradoxically, revisiting old photos of Amelia brings me both joy and anxiety. Of course, I cherish every second with her, but older photos often remind me of what #BattenDisease has cruelly stolen from her over the years. Still, this photo, taken 7 years ago, remains one of my favorites.
Very grateful to Collaborations Pharmaceuticals and @collabchem.bsky.social for working toward a CLN1 #BattenDisease treatment. Our Amelia appears in a slide in this video and we still hold out hope she might one day benefit from this type of work.
youtu.be/pIGp4hyMlBk?...
youtu.be/pIGp4hyMlBk?...
An Enzyme Replacement Therapy for Batten Disease CLN1 and other Neurodegenerative Diseases
This is a brief pitch video describing the development of an enzyme replacement therapy for an ultra rare disease called Batten Disease CLN1.
youtu.be
May 6, 2024 at 10:05 PM
Very grateful to Collaborations Pharmaceuticals and @collabchem.bsky.social for working toward a CLN1 #BattenDisease treatment. Our Amelia appears in a slide in this video and we still hold out hope she might one day benefit from this type of work.
youtu.be/pIGp4hyMlBk?...
youtu.be/pIGp4hyMlBk?...
Broke out the oxygen concentrator to help keep Amelia’s blood oxygen levels up. Sometimes, we have to put in some extra respiratory therapy work to keep her airway clear.
#BattenDisease remains a horrendous condition.
#BattenDisease remains a horrendous condition.
April 24, 2024 at 3:26 AM
Broke out the oxygen concentrator to help keep Amelia’s blood oxygen levels up. Sometimes, we have to put in some extra respiratory therapy work to keep her airway clear.
#BattenDisease remains a horrendous condition.
#BattenDisease remains a horrendous condition.
The @urochester.bsky.social is a leader in #Battendisease research & care. #URochesterResearch recently discovered a possible neuromarker for the disease. #RareDiseaseDay #RareDiseaseDay2024 www.urmc.rochester.edu/news/publica...
Researchers find possible neuromarker for ‘juvenile-onset’ Batten disease
New research suggests an easy-to-measure brain process may be a target or biomarker in measuring treatment outcomes in clinical trials for patients with Batten disease.
www.urmc.rochester.edu
February 29, 2024 at 9:48 PM
The @urochester.bsky.social is a leader in #Battendisease research & care. #URochesterResearch recently discovered a possible neuromarker for the disease. #RareDiseaseDay #RareDiseaseDay2024 www.urmc.rochester.edu/news/publica...
For Rare Disease Day (2/28), the amazing Jennifer Palermo reached out and got Seattle’s Columbia Center and the under-construction Mary Bridge Children’s Hospital in Tacoma to light up in Rare Disease Day colors!
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
March 1, 2026 at 8:50 PM
For Rare Disease Day (2/28), the amazing Jennifer Palermo reached out and got Seattle’s Columbia Center and the under-construction Mary Bridge Children’s Hospital in Tacoma to light up in Rare Disease Day colors!
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
Amelia got her new AFOs (ankle foot orthotics) last week. We’ll need to gradually dial them in, but we’re thankful to have another tool to hopefully ease some of her #BattenDisease symptoms — specifically muscle spasticity, tone, and range of motion in her lower legs.
youtube.com/shorts/_ndk3...
youtube.com/shorts/_ndk3...
Amelia's New Butterfly AFOs (Ankle Foot Orthotics) #battendisease #raredisease #shorts
YouTube video by For Amelia Palermo (Batten Disease Awareness)
youtube.com
October 15, 2024 at 5:45 AM
Amelia got her new AFOs (ankle foot orthotics) last week. We’ll need to gradually dial them in, but we’re thankful to have another tool to hopefully ease some of her #BattenDisease symptoms — specifically muscle spasticity, tone, and range of motion in her lower legs.
youtube.com/shorts/_ndk3...
youtube.com/shorts/_ndk3...
Expressions of Interest OPEN for #BattenDisease Grant Round. The top priority research lines are so inspiring: best gene-targeted #therapy? which valid, reliable #biomarkers? Can disease progression be halted or reversed? Apply here: bdsrafoundation.org/wp-content/u...
bdsrafoundation.org
August 21, 2025 at 9:11 AM
Expressions of Interest OPEN for #BattenDisease Grant Round. The top priority research lines are so inspiring: best gene-targeted #therapy? which valid, reliable #biomarkers? Can disease progression be halted or reversed? Apply here: bdsrafoundation.org/wp-content/u...
We’re still awake at 6AM again. Not sure what #BattenDisease has been doing to our Amelia these past few weeks, but these super late nights/early mornings are not fun.
March 24, 2024 at 1:04 PM
We’re still awake at 6AM again. Not sure what #BattenDisease has been doing to our Amelia these past few weeks, but these super late nights/early mornings are not fun.
Today, we are hosting families affected by Batten disease, a rare and severe childhood dementia.
Early-stage research has shown promising results for a gene therapy targeting this.
Mouse and sheep studies indicate potential benefits - an encouraging step forward.
#BattenDisease
edin.ac/4rrzctr
Early-stage research has shown promising results for a gene therapy targeting this.
Mouse and sheep studies indicate potential benefits - an encouraging step forward.
#BattenDisease
edin.ac/4rrzctr
Gene therapy could inform treatment for childhood dementia | The Roslin Institute | The Royal (Dick) School of Veterinary Studies
Studies in mice and sheep offer hope for future treatment of a neurological disease affecting children.
edin.ac
November 28, 2025 at 2:43 PM
Today, we are hosting families affected by Batten disease, a rare and severe childhood dementia.
Early-stage research has shown promising results for a gene therapy targeting this.
Mouse and sheep studies indicate potential benefits - an encouraging step forward.
#BattenDisease
edin.ac/4rrzctr
Early-stage research has shown promising results for a gene therapy targeting this.
Mouse and sheep studies indicate potential benefits - an encouraging step forward.
#BattenDisease
edin.ac/4rrzctr