CureAP-4
@CureAP4
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The Cure AP-4 non-profit organization was founded in 2016 by families of two of the known SPG47 patients.
Newburyport, MA
Joined November 2016
RT @Alex_Doune: Another independent discovery of ATG9A missorting in AP-4 deficiency: So pleased to finally see th….
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Five-Year Old BFFs Share Devastating Rare Disease; Spur Intercontinental Research Offering Hope to Families #rarediseaseday2019 #ShowYourRare #curespg47
prnewswire.com
/PRNewswire/ -- Rare Disease Day, February 28th 2019, is the one day when those affected by a rare disease, depleted of support, direction, and optimism, rely...
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A much needed vacation for these two hard-working girls! We’re so lucky that we were able to overlap our vacations and spend a few days together at the happiest place on Earth! #youvegotafriendinme #curespg47 🏰✨
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RT @Alex_Doune: Very excited to announce the Robinson and Borner lab paper "AP-4 vesicles contribute to spatial control of autophagy via RU….
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Molly has recently taken an interest in ballet, but it has been a challenge finding a dance class for her due to her physical limitations. So - we brought ballet to her! We installed a ballet bar and mirror in her playroom and a family friend came over and taught her ballet!
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Many thanks to Doug Pederson for having dinner with Kevin and some of the members of @RivertonCC as part of a donation from our 1st ‘Golf for a Cure’ outing!.If you would like to be a part of our 2nd annual event by playing or sponsoring, please visit
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SPG47 causes extreme weakness in Molly’s legs and she works so hard each and every day to get stronger. Bending down to pick things up from the ground may seem simple to most, but this is a HUGE accomplishment for Molly!
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RT @BonifacinoJuan: Our latest paper showing ATG9A missorting and axonal dystrophy in neurons from a mouse model of AP-4-deficiency syndrom….
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Cure SPG47 Fundraiser tomorrow at Kendra Scott in Ardmore, PA at 5pm! 20% of proceeds will be donated. You can also order via phone (610) 726-1838.
facebook.com
Event in Ardmore, PA by Cure AP-4 on Wednesday, January 17 2018
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“If you can’t fly, then run, . If you can’t run, then walk, . If you can’t walk, then crawl, . But whatever you do,. you have to keep moving forward.”. -Martin Luther King Jr.
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RT @Alex_Doune: December a very exciting month for AP-4 deficiency research. Independent studies from Bonifacino (NIH), Robinson (CIMR) & K….
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RT @PatientWorthy: Handsome Grant Money Aids Rare Disease Research #spasticparaplegia #raredisease HSP Research Fou….
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What a great segment @KerryKavanaugh (an old friend of Kasey’s from #Medford) and Boston 25 news did on us tonight for their 6pm news! Even better- if you missed it you can see it again at 10 PM! Set your DVR if you’re an early bird!. #Boston25.#CureSPG47.#DoubletheGoodSPG47
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Molly is a toddler of few words but loves cheering for the @Eagles l🦅💚 #FlyEaglesFly #curespg47 @cj_wentz @TorreySmithWR @ZERTZ_86 @TheWorldof_AJ @JayTrain #givingtuesday.
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RT @BonifacinoJuan: Our latest paper showing that adaptor protein complex AP-4 mediates export of the autophagy protein ATG9A from the TGN….
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