Two of Central Scotland's iconic landmarks illuminated in orange to raise awareness for Batten Disease.

Check out more info here: facebook.com/nicolesbattenj… & bdfa-uk.org.uk

#Scotland #wallacemonument #falkirk wheel #stirling #falkirk #battendisease #battenawarenessday …

19 years ago today, I lost my little sister, Caitlin, to the CLN2 strain of #BattenDisease . She was 9 years old. If you would like to know more about this cruel, devastating rare disease, please consider visiting bdfa-uk.org.uk

Thanks ❤️ xx

Missing you so. What I wouldn’t give to kiss those cheeks #childloss #battendisease #Lifegoeson

In todays CRESCO guest lecture Dr. Jonathan Cooper Jonathan Cooper gave an intriguing lecture titled 'Developing gene therapy for childhood neurodegeneration: lessons from #BattenDisease '.

Happy #Batten Disease #Awareness Day! We love all the #warriors out there, including our own #friend and #classmate ! #BDSRA #Batten #battenday2023 #beyondbatten #friend ships #preschool #PSLovesU Fairfax Schools 🌟 Pine Spring ES{FCPS} FCPS Region 2 NIH

The National Wallace Monument with the Ochil hills in the distance. the monument was illuminated in orange to raise awareness of Batten disease.

More info: Nicole Rich BDFA

#battendisease #battenawarenessday #wallacemonument #scotland #stirling

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.

Dystonia (involuntary muscle contractions) is common for those with #BattenDisease . For Amelia, it often means clenched fists and curled-up arms. She wears a variety of braces to help stretch out her limbs and hopefully give her stiff muscles, tendons, and joints a break.

Today is International #BattenDisease Awareness Day. I lost my 9 year old sister, Caitlin, to CLN2 Batten Disease in 2005. If you would like to know more about this devastating, cruel disease, please consider visiting bdfa-uk.org.uk

Thank you 🧡🧡🧡 BDFA

The #battendisease conference has started off with new and old friends! BDSRA Foundation Effie Parks
#danceparty 🕺💃

I'm very excited to share our latest publication on Nature Communications describing how the #BattenDisease protein #CLN3 is critical for #lysosome biogenesis and reformation, uncovering a novel disease mechanism. Texas Children's Tigem Telethon

rdcu.be/dfV90

Amazing/Inspiring preclinical work in #BattenDisease by Jonathan Cooper Washington University Department of Pediatrics during today’s #PPI Meeting!

Es una batalla ardua que muchos luchamos... pacientes, familias, sanitarios, investigadores...por toda la investigación que es tan necesaria y nos da esperanza
#EnfermedadesRaras #BattenDisease #SinCienciaNoHayCura FEDER | Enfermedades Raras SEBBM Ministerio de Ciencia, Innovación y Universidades Instituto de Salud Carlos III (ISCIII) RarasNoInvisibles

Please consider supporting or joining the Gaine Invitational golf tournament October 12 at Blue Mash Golf in Maryland. Proceeds directly support Wheelers Warriors in the fight against Juvenile Batten Disease CLN3. wheelerswarriors.org/2023-gaine-inv… ❤️ #BattenDisease #raredisease #awareness …

Este 28 de febrero, se celebra el Día Internacional de las Enfermedades Raras en todo el mundo.
#rarediseaseday #enfermedadesraras #rarediseaseday 2023
Los gemelos Theo y Said, hijos de mis primos @tamys1218 y @dariogarzonlucero, padecen la enfermedad de Batten #battendisease

Cristina started Juju and Friends CLN2 Warrior Foundation for her son and to provide support for those living with #BattenDisease . Watch her heart touching story and share your journey at rareandready.org. #RareDisease

This week on “Stories,” I speak with Ned Timmerman about a special experience his son, who is visually impaired, had at Sphere & the friendship that resulted from it. 🙏🏼

Debuts tomorrow 🎙️

#u2xradio #u2sphere #U2
#tassoulakokkoris #stories
#siriusxm #battendisease