Top Tweets for #BATTENDISEASE
Today is #BattenDiseaseAwarenessDay 💙 #BattenDisease is a family of rare, genetic neurodegenerative disorders.
NORD’s RareCare patient assistance program helps eligible #Batten patients pay for their care. Apply: https://t.co/v78gprop7Y
or email [email protected]
Today is International #BattenDisease Awareness Day! 🎉
➡️ Learn more about Batten disease: https://t.co/vCWaAZ8xGV
➡️ Check out our research: https://t.co/pJUQy4GObe
➡️ Get involved with our patient advocacy partner @BDSRA: https://t.co/t0YYY0Cr8d
#ForgetMeKnot
$25 Billion for Ukraine.
$0 for a small Canadian citizen’s life-saving medicine.
This is the cruel reality of the Canadian government’s priorities today. Absolutely shameful that we fund foreign conflicts while leaving our own children to die. 🇨🇦
#BattenDisease #Brineura #CDNpoli #HealthcareCrisis #Canada #Ukraine #RareDisease @MarkHollandLib @PierrePoilievre
Meet Ethan! Ethan's mum,Danie shares these moving words about Ethan for Rare disease day. “Ethan is stronger than we could imagine as his body goes through strain with his deterioration, he smiles through it all! #RareDiseaseDay #ShowYourRare #RareDiseaseAwareness #battendisease
Un estudio preliminar sugiere que miglustat podría ralentizar el deterioro físico en la enfermedad de Batten juvenil (CLN3). Lis datos apuntan a una posible terapéutica en una enfermedad neurodegenerativa sin tratamiento curativo.
#BattenDisease #EnfermedadesRaras #Neurociencia
👀 Deadline extended until January 26th!
➡️ #BattenDisease Clinical Research Consortium (BDCRC) Early Career Investigator Grant
💬 Supports innovative research and career development in #NeuronalCeroidLipofuscinoses
✅ Learn more and apply: https://t.co/meNpOFKBRE
@BDSRA
🧠🔬 Un estudio en Scientific Reports muestra que la N-acetil-L-leucina tiene eficacia terapéutica limitada en un modelo murino de CLN1 (Batten). Resultados clave para orientar futuras terapias
#EnfermedadesRaras #CLN1 #BattenDisease #Investigación #CienciaBasadaEnEvidencia
🧬 RESEARCH UPDATES 🧬
There’s LOTS to catch up on! Read the latest Batten disease research and clinical updates, written by our Head of Research & Medical Affairs, Dr. Ineka Whiteman: https://t.co/dIITWDP626
#BattenAdvocatesForACure #science #research #bdsra #battendisease
🧠 Childhood Dementia: when dementia strikes children🌟 A surprising nameWhen we hear the word dementia, we immediately think of the elderly and disease… https://t.co/A5VMz0V16G #Childhooddementia #Rarediseases #Battendisease #Sanfilipposyndrome #NiemannPickdisease
After a great trip to New Zealand visiting @NclSteph the @BDSRA 's Ineka Whiteman and Nadia Mitchell, today sees the start of NCL 2025. Plenty of PSDL presentations on our latest work, looking forward to seeing many colleagues & families #battendisease
🧬 En Nature Reviews Neurology analiza los mecanismos de la Enfermedad de Batten (NCLs): disfunción lisosomal, papel de la glía y otros tejidos.
📌Tras la experiencia en CLN2, se abren nuevas vías hacia terapias innovadoras
👉 https://t.co/KrQ1XN1ryG
#BattenDisease @senep_es
The Batten disease community is family 💛❤️💜
Re-live the Pre-Conference Thursday of this year’s Annual Family Conference in Lincoln, Nebraska, by watching this video produced by Ira Graham III Photography & Films!
#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease
🔬 RESEARCH GRANT APPLICATIONS NOW OPEN! Applications are now open for the 2025-26 BDGRI Grant Round. Details on eligibility and how to apply, please visit our website: https://t.co/gBEKWevHrK
Deadline for EOI applications is SEPTEMBER 30, 2025.
#BattenDisease #battenresearch
Join the Ebner lab to discover lysosomal lipid logistics pathways
Postdoc, PhD, Master
Ebner lab
See the full job description on jobRxiv: https://t.co/0ovFy3iRSy
#battendisease #lipidtransport #lysosome #membranecontactsites #microglia #microscopy #neurodegeneration #repair
#ScienceJobs
https://t.co/B6vmuxsRkg
Breakthrough for Batten disease: Gene therapy targeting CLN3 dramatically improves neuromuscular function in preclinical models. Hope is on the horizon. 🧬✨ #GeneTherapy #Neuroscience #BattenDisease
https://t.co/IN7S60rpeH
Evaluating #HealthRelatedQualityOfLife and Family Function in #CLN3 #BattenDisease
New in @pedneurojournal from the #LysosomalDisease Network (LDN): https://t.co/6E9yfYpa0K
@RobShaw_BC Disagreement? NOBODY in the medical field disagrees about #Brineura’s effectiveness - this was a cruel ploy to save $$ until the public heat got too hot! #BCpoli #SaveCharleighPollock #BattenDisease
@mamaadvocate1 Beautiful to see - she deserves to live a life as normal & comfortable as possible! Bravo @JeffKibbleCML @ElizabethMay @DrKindyMLA & all those who have spoken out to #saveCharleighPollock & get her the medication she needs!
#BCpoli #Brineura #BattenDisease
Thank you to the Lincoln Children’s Museum and the Lincoln Children's Zoo for hosting a pre-conference and post-conference outing for our Batten families!
#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Come on down to #DuncanDays and visit Lighthouse Home Inspections!
Bid on awesome items — 100% of proceeds go to support Charleigh and her family 💛
We’re here from 10AM–3PM TODAY — don’t miss it!
#StandWithCharleigh #SupportLocal #BattenDisease #DuncanBC
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