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CureAP-4

@CureAP4

The Cure AP-4 non-profit organization was founded in 2016 by families of two of the known SPG47 patients.

 Newburyport, MA
cureAP4.org
Joined November 2016
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Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)Photo by CureAP-4 (@CureAP4)
Another independent discovery of ATG9A missorting in AP-4 deficiency: doi.org/10.1080/15548627.201…. So pleased to finally see this in print. Congratulations @Davoriii and @JosefKittler. Very important for efforts to cure AP-4-HSP. #CureSPG47 – at Cambridge, England
Image from Alexandra Davies (@Alex_Doune)
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Very excited to announce the Robinson and Borner lab paper "AP-4 vesicles contribute to spatial control of autophagy via RUSC-dependent peripheral delivery of ATG9A" finally lives and breathes online! Thanks to everyone who has been involved! #CureSPG47 nature.com/articles/s41467-0…
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Our latest paper showing ATG9A missorting and axonal dystrophy in neurons from a mouse model of AP-4-deficiency syndrome, a form of hereditary spastic paraplegia, is available @PLOSGenetics tinyurl.com/yag3yu6y Relevant to @CureSPG47 @AutophagyPapers @NICHD_NIH
Image from Juan S. Bonifacino (@BonifacinoJuan)
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December a very exciting month for AP-4 deficiency research. Independent studies from Bonifacino (NIH), Robinson (CIMR) & Kittler (UCL) labs are in agreement on a potential disease mechanism. Happy Christmas @CureSPG47. I hope we see continued progress in 2018 to #CureSPG47. teapawt.net/Davoriii/status/943466…
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Handsome Grant Money Aids Rare Disease Research bit.ly/2kHB9S4 #spasticparaplegia #raredisease HSP Research Foundation @CureSPG47 @Spastic_USA
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Our latest paper showing that adaptor protein complex AP-4 mediates export of the autophagy protein ATG9A from the TGN is out on PNAS. pnas.org/cgi/content/long/17… Findings may be relevant to AP-4 deficiency syndrome @CureSPG47 Effects of AP-4 KO on ATG9A distribution are dramatic.
Image from Juan S. Bonifacino (@BonifacinoJuan)
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Golfing for a Cure to help battle a rare disease raising money for research: cbsloc.al/2wZkkcN @CureSPG47 #hope
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Incredible news! teapawt.net/BCH_Innovation/status/…
BCH Innovation News (@BCH_Innovation) profile pictureBCH Innovation News@BCH_Innovation31 Aug 2017
On Vector: In historic move, @US_FDA approves a #genetherapy for the first time: ms.spr.ly/6019rvZZb #science #history #childcancer
Image from BCH Innovation News (@BCH_Innovation)
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#RivertonCountryClub in #Cinnaminson to host fundraiser for #HereditarySpasticParaplegia. ow.ly/R6M630egkZu @CinnaminPatch
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Transatlantic discussion about AP-4 yesterday with Darius Ebrahimi-Fakhari @BostonChildrens & Jenny Hirst @CIMR, connected by @CureSPG47.
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Researchers partner with @CureSPG47 to understand a rare hereditary spastic paraplegia: on.bchil.org/2ozAJRo #neuroscience
Image from BCH Innovation News (@BCH_Innovation)
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Great to hear discussions about how to #CureSPG47 from Boston! Shame I'm five hours ahead in UK! Time to say good night to you @CureSPG47.
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It's #RareDiseaseDay. I'm thinking of Molly & Robbie @CureSPG47 and all families affected by a rare disease. teapawt.net/rarediseaseday/status/…
Rare Disease Day (@rarediseaseday) profile pictureRare Disease Day@rarediseaseday8 Feb 2017
The #RareDiseaseDay Thunderclap campaign is now online! Sign up and share your support - be part of the change! ow.ly/UQao308Ohtr
Image from Rare Disease Day (@rarediseaseday)
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Fantastic to talk with Chris from @CureSPG47 yesterday. New meaning brought to my #PhD research. Together we can #curespg47. teapawt.net/BostonChildrens/status…
Boston Children's (@BostonChildrens) profile pictureBoston Children's@BostonChildrens20 Dec 2016
Stronger together: Families of girls with SPG47 find support in each other: on.bchil.org/2h9DpCN
Image from Boston Children's (@BostonChildrens)
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Molly & Robbie are my #PhD inspiration <3 teapawt.net/CureSPG47/status/81939…
CureAP-4 (@CureAP4) profile pictureCureAP-4@CureAP412 Jan 2017
Molly & Robbie are featured on @InsideEdition. Story will air this Friday! Check your local listings! #curespg47 insideedition.com/headlines/…
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.@InsideEdition tells the story of SPG47 patients, Molly & Robbie, & their parents unending search for a cure: on.bchil.org/2ionD5E
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CureAP-4 retweeted
The CIMR (@TheCIMR) profile picture
The CIMR@TheCIMR6 Jan 2017
A rare hereditary spastic paraplegia from mutations in the AP-4 complex, discovered by the Robinson lab and @BonifacinoJuan. @CureSPG47 teapawt.net/CheckOrphan/status/808…
Rare Diseases (@CheckOrphan) profile pictureRare Diseases@CheckOrphan12 Dec 2016
Best Friends Have The Same Rare Disease, Their Families Search For A Cure Together ow.ly/sGtH3072FTp #Hereditary #Spastic #Paraplegia
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Best Friends Have The Same Rare Disease, Their Families Search For A Cure Together ow.ly/sGtH3072FTp #Hereditary #Spastic #Paraplegia
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Stronger together: Families of girls with SPG47 find support in each other: on.bchil.org/2h9DpCN
Image from Boston Children's (@BostonChildrens)
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2 toddlers with rare disease form friendship in their fight - @JeffChirico has full report: 6abc.cm/2hQZWUx
Image from Action News on 6abc (@6abc)
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