AADC Research Trust

A Charity dedicated to helping children WORLDWIDE suffering the disabling ultra-RARE brain disease; Aromatic Amino Acid Decarboxylase (AADCd) Deficiency

[AADC Research Trust @AADCTRUST]

Excited to co-author a landmark #AADCdeficiency study, presenting 26 new DDC variants. Pushing boundaries in #RareDisease research thanks to the amazing Professor Nenad Blau and all the other contributors. #GeneticResearch #AADCd #ScientificBreakthrough 🧬🔬 Lisa Flint

[AADC Research Trust @AADCTRUST]

Honored to co-author these crucial SOPs for #GT surgery & follow-up in #AADCd. Standardisation is key for tracking long-term outcomes. Thanks to @JIMD_Editors for the shoutout to #AADCtrust. #AADCGeneTherapy #RareDisease
Lisa Flint

[The Journal of Inherited Metabolic Disease @JIMD_Editors]

AADC is one of the few IMD for which gene therapy has moved from the lab into clinical use. Upstazta was approved for use earlier this year and Roubertier et al discuss the necessity of a framework for a quality-assured application of its use.
https://t.co/TsI5heqfc8

@AADCTRUST

[AADC Research Trust @AADCTRUST]

@DrJo_Ng @UCLIoN @HesterChu @SimonWad @Dr_RKarda @jantinaod @drelliechilcott @AnnaKeeganUCL @DrAKBoyle We love new beginnings @AADCTRUST … Here’s to yours and the creation of many more you’ll help create for children in need … Good Luck Jo 👏🏻❤️ xx

[AADC Research Trust @AADCTRUST]

@OSUNeuroInst In Prof B we TRUST! ❤️

[AADC Research Trust @AADCTRUST]

Would’ve enjoyed watching this presentation, especially as a patient organisation who drove this therapy forward and knowing all the benefactors personally! 👏🏻👏🏻👏🏻❤️

[Joanne Ng 伍仲昕 @DrJo_Ng]

Amazing outcomes with Midbrain AAV2-AADC!! @TNeuroSci_Lab @KrystofB #ESGC2022 @SimonWad @HesterChu @Dr_RickPrivo @AADCTRUST chaired by @Dr_RKarda

[AADC Research Trust @AADCTRUST]

https://t.co/mJdiSZ3Kns

[Joanne Ng 伍仲昕 @DrJo_Ng]

👇@Nicole_Paulk Gene therapy for rare disease @RareBeacon @RareEpilepsy @TARareDisease @rarediseaseuk @rarediseasesnet @RareDiseases @AADCTRUST @EJPRareDiseases @camraredisease @RareDiseasesIE @CheckOrphan hosted by @_BSGCT @Dr_RKarda

[AADC Research Trust @AADCTRUST]

Literally can’t wait 🙏🏻 for GT to resume in Poland again and more AADCd children have the treatment … Thank you Prof B and #CCF #CureAADCd #GeneTherapy

[AADC Research Trust @AADCTRUST]

Happy to be part of these two beautiful girls journeys to #GeneTherapy ... 🙏🏻 they keep going from strength to strength ❤️ #CureAADC

[Avis Favaro @Avis_Favaro]

It's known as Pediatric #Parkinsons-a rare genetic disorder. But #GeneTherapy is changing the lives of two young Canadian girls with this condition https://t.co/ceurvV27Wf via @CTVNews @AlexandraMaeJ @AADCTRUST @ColumbusChildrn #RareDiseases

[AADC Research Trust @AADCTRUST]

V. good graphics explaining covid and indoor virus spread

[Abraar Karan @AbraarKaran]

The graphics in this article are excellent— this is a huge part of communications that has been missing. If you want to understand how layered interventions reduce #covid19 spread— why masks are indispensable but not always “enough” — read this.

https://t.co/r1KfeKHW5J

[AADC Research Trust @AADCTRUST]

⁦@WHO⁩ ⁦@3M⁩ ⁦@BorisJohnson⁩ ⁦@NHSuk⁩ ⁦@CMO_England⁩ ⁦@GMB⁩ ⁦@BBCWorld⁩ ⁦@SkyNews⁩
Does FFP3 help or harm in the fight against #covid19 https://t.co/Uq8bNckrwd

[AADC Research Trust @AADCTRUST]

What a little CHRISTMAS CRACKER Huzaifah is!

Our gorgeous little boy from the UK, in his Spiderman PJs, has now received AAV2-hAADC Gene Therapy Treatment in Poland. A Christmas gift that I am sure Huzaifah... https://t.co/X5oMggtqIu

[AADC Research Trust @AADCTRUST]

We are excited to share with you a truly inspirational book... https://t.co/nGxGLpwLvW

[AADC Research Trust @AADCTRUST]

On the 10th DAY OF CHRISTMAS, we opened the door of our advent calendar to find a truly special gift was given…

Our handsome boy, 12 year old Marcus from the UK received AAV2-hAADC Gene Therapy in Poland, a... https://t.co/TtgqhbgRPi

[AADC Research Trust @AADCTRUST]

@eightth may we ask if you are using this twitter name? we’d really like to use if it was possible. Please can you let me know, thank you 🙏🏻 so much Lisa

[AADC Research Trust @AADCTRUST]

We are absolutely THRILLED to share the news with you that Swathi, aged 19, from the USA, has now received AAV2-hAADC Gene Therapy Treatment in Poland. She is the 3rd young ADULT to receive the pioneering brain... https://t.co/zexkpR4G4M

[Joanne Ng 伍仲昕 @DrJo_Ng]

@SimonWad @Dr_RKarda @jowinx @UCLTRO 😔what use is #zolgensma- that’s why 200 SMA kids in india are in #spinraza trial. Highest regard for Bankiewizc -gene therapy vector #free for #aadc families. They fundraise with @AADCTRUST for their surgery & care in Europe but a fraction compared to #zolgensma

[Laura (Brod) Hameed @laurabrod]

Please read... What wonderful news! @AADCTRUST @ColumbusFdn @FundaColumbus @NeurosurgeryOSU #genetherapy #RareDisease https://t.co/KhdvF9CwAq

[Mel Barham @MelBarhamITV]

Hallie has an ultra rare brain condition which has left her essentially locked in her own body. They’re hoping the operation may pave the way for her to walk and talk and stop her daily seizures @GranadaReports https://t.co/pYflZTtNtd

[Mel Barham @MelBarhamITV]

On @GranadaReports tonight I’m in Poland following 6 year old Hallie as she becomes only the 8th child to undergo experimental brain surgery. Our viewers helped family raise £70,000 for the operation #aadc #genetherapy #hopeforhallie