Yesterday, in honor of International Batten Disease Awareness Day, we published a new video showcasing some of the children born with the CLN1 variant. There is still no treatment or cure and we need funding support to keep those efforts going. Please watch and share this video far and wide as a reminder of what we’re fighting for!
In two days it's 🧡 #BattenDay2023 🧡
You could plan to wear something orange and share our stories around.
It's a rare disease but together we're stronger 💪
Friends and family have always been supporting us: asking how Maëlyn is doing; listening to her father's podcast [fr] https://lecridelagirafe.org/serie/quand-meme-pas-papa/ ; simply reaching out 🧡
Thank you, merci, takk, danke, gracias
#BattenDay2023
#VaincreLesMaladiesLysosomales
#BDSRA
#BattenDiseaseUK
« Quand même pas, Papa ! » Carnet de bord d’un proche aidant Dans ce podcast, je raconte mon quotidien, celui que je vis en accompagnant ma fille atteinte d’une maladie génétique dégénérative. Adapter le quotidien, se confronter aux regards extérieurs, les défis d’une mémoire qui m
Her diagnostic journey lasted more than 4 years. Why does a 6 year-old start losing her sight? Having epilepsy seizures? Only a genetic test could answer: her cells' recycling centers (lysosomes) don't work, leading to progressive brain deterioration. A rare genetic disease without a cure.
Rare genetic diseases often have too long a diagnostic journey, and we all hope that this was faster & better cared for. Family organisations do a fab job already:
My niece loves listening to audio books while cuddled in soft, smooth fabrics. She smiles when her dad says silly things.
🧡
Her parents & carers provide round the clock care needed for a toddler mind with multiple disabilities.
#BattenDay2023 #BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales 🧡
Hi! I'm Emeline, über lucky aunty to 18-year-old Maëlyn. She has #Batten disease.
#BattenDay2023 is round the corner, so I'll thread what I know about this neurodegenerative disease.
#BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales 🧡
Philip Palermo
emeline