Here is the video that launched We have lost Noah but our work is not done. #BattenDisease

Thank you @RepBillFoster for stopping by the 8th Annual NCL Translational Research Conference in Lombard yesterday to learn a bit more about #BattenDisease and #RareDisease. @BDSRA @RushUniversity

RT @WangLysolab: This honor from @BDSRA as a #BattenDisease Center of Excellence is a beginning for @chocchildrens. We look forward to coll…

RT @ScreenPlusNY: 20,000 babies enrolled! Congratulations team! 🎉 @EinsteinMed @MontefiorePeds @nyulangone @MountSinaiNYC @NorthwellHealth…

@ScreenPlusNY @EinsteinMed @MontefiorePeds @nyulangone @MountSinaiNYC @NorthwellHealth @MaimoHealth Wow. Amazing job team!!!

RT @Batten_PSDL: Check out the PSDL's latest pre-print from 1st author @keigotakahashi6 and co-authors @HemanthNelvagal @PattiDickson @WUST…

@Batten_PSDL @keigotakahashi6 @HemanthNelvagal @PattiDickson @WUSTLPeds @MedgenW Congrats to this great team !

RT @statnews: The disconnect between the timing of academic research and the urgency of treatment for rare disease can lead to the absurd.…

RT @Batten_PSDL: On our way to Philadelphia for the ENS 2024 the Enteric Nervous System conference organized by @HeuckerothLab. Ewa Ziółkow…

@NIH_NINDS @Batten_PSDL as usual--the NIH is woefully not in touch with the latest info .....when will this cycle end? --bad info is BAD for patients! we deserve better @BDSRA @NIH_NINDS ? #BATTENDISEASE #CLN2 happy to discus w PJ, Groft or Tisdale about what you got wrong

RT @NIH_NINDS: Neuronal ceroid lipofuscinoses (NCLs), also known as Batten disease, is the name for a group of rare inherited neurodegenera…

@macauleylab @yucanuck08 There is a new cln2 monkey in Japan 🇯🇵. I don’t have the paper but was about 6-8 months ago I think.

@macauleylab @yucanuck08 Better than hanging w the batten bear identified in Riga Latvia I suppose !

@Batten_PSDL noooooooo!

@may_khanna @nyu @UFMedicine @UF_Pharmacology Congratulations!

RT @Philip_Palermo: The REGENXBIO news this week was devastating — especially for CLN2 families. And it reminded me of the heartache CLN1 f…

@ryancohen Oh. Oh … let’s all just make nebulous quotes. Well played sir

@ScreenPlusNY @APHL Congrats Dr.Gelb !

@keigotakahashi6 Very cool !

@AlanFinglas1 Congrats Alan...well deserved !

RT @IAPonomarenko: Alright, people. Follow me on BlueSky! Let’s stay in touch in case we get ultimately tired of this mess.