@StopALD

The Stop ALD Foundation: Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention. ALD was the disease highlighted in the film "Lorenzo

 Philadelphia, PA
StopALD.org
Joined February 2009
  • Tweets168
  • Following11
  • Followers366
20Media
Stop ALD Foundation retweeted
ULF@UlfUnited13 Feb 2023
Attention ALD Families: A Stanford Research Study on Vitamin D needs the input of parents or guardians of boys with ALD. This survey is essential to design a vitamin D study that is in line with the values and interests of ALD families. Survey: f1ahhllmfjr.typeform.com/to/…
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The @alexTLCsupport Weekend, 20-21 November -- Bringing together those affected by genetic leukodystrophy for a weekend of talk, support & fun! eventbrite.co.uk/e/alex-tlc-…

Alex TLC Community Weekend 2021

The Alex TLC Community Weekend. Bringing together those affected by genetic leukodystrophy for a weekend of talk, support & fun!

eventbrite.co.uk
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Stop ALD Foundation retweeted
Dreamit Ventures@dreamit27 Apr 2021
Is your startup's solution 10x better than the current alternative? Watch our latest #DreamitDose from @sbarsh for 5 ways to separate from the pack and beat the competition.👇 youtu.be/fOE-0BSmAEc
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Stop ALD Foundation retweeted
Stephan Kemp@StephanKempNL14 Sep 2021
Replying to @LDNBSAction @StopALD @ALDConnect @UlfUnited
This is incorrect. >80% of women with ALD develop symptoms. They are not just carriers! For more, #OpenAccess publications: bit.ly/2WgjPov (2019) and bit.ly/2TOWLA6 (2014) and/or visit: bit.ly/2Y9oZnJ
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Stop ALD Foundation retweeted
Emily Williams@EmDashily5 May 2021
Brian shares what life is like #becauseofgenetherapy @ALDConnect @StopALD #savetheboys
Boston Children's@BostonChildrens5 May 2021
#BecauseofGeneTherapy Brian is an active and athletic 9-year-old. #ALD #genetherapy

Because of gene therapy: Brian

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Stop ALD Foundation retweeted
Boston Children's@BostonChildrens23 Apr 2021
Matthew, the ‘wee marvel’: One of the first #ALD gene therapy recipients: ms.spr.ly/6019V5APt #BecauseofGeneTherapy @StopALD
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bostonchildrens.zoom.us/webi…
Learn more about the ALD Family Weekend taking place March 19-21, 2021! aldfamilyweekend.com/

ALD Family Weekend

The ALD Family Weekend is a unique experience that allows families affected by adrenoleukodystrophy to connect in a fun environment - The Painted Turtle Camp. Parents, caregivers are encouraged to...

aldfamilyweekend.com
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Exciting topline results from a Phase 2/3 trial on a new treatment for adrenomyeloneuropathy (AMN) minoryx.com/media/minoryx_pr…

Minoryx presents topline results from Phase 2/3 “ADVANCE” study demonstrating significant clinical...

minoryx.com
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Stop ALD Foundation retweeted
CheckRare
@CheckRare19 Nov 2020
Dr. Jörn-Sven Kühl, Department of Pediatric Oncology, Hematology and Hemostaseology at University Hospital Leipzig, discusses long-term results from Phase 2/3 Starbeam study and data from Phase 3 ALD-104 study @StopALD @bluebirdbio Bluebird Bio checkrare.com/gene-therapy-s…
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Stop ALD Foundation retweeted
Brians Hope CT@BriansHopeCT13 Nov 2020
Replying to @ALDConnect @StopALD @AldFamily @remember_girls @HuntersHopeFDN @ALD_Raremark @RunforALD @EmDashily
It was a great day, lots of information and I felt a wonderful sense of community. What we all need in these times. Thank you @ALDConnect
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Agreed. That’s why we helped drive this forward on a national level.
Corey Lubkiwski@TicalCorey13 Nov 2020
Replying to @StopALD
You need newborn screening! You need it. I know more than anybody else.
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Stop ALD Foundation retweeted
CheckRare
@CheckRare29 Oct 2020
Dr. Jörn-Sven Kühl, Department of Pediatric Oncology, Hematology and Hemostaseology at University Hospital Leipzig, discusses long-term results from Phase 2/3 Starbeam study and data from Phase 3 ALD-104 study @StopALD @bluebirdbio Bluebird Bio checkrare.com/gene-therapy-s…
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Stop ALD Foundation retweeted
ALDConnect@ALDConnect26 Oct 2020
Register now to be part of the largest international conference focused solely on #adrenoleukodystrophy: bit.ly/aldconnect FREE for Patients, Caregivers, Advocates, Physicians/Providers, Scientists, and Researchers. ($75 for Industry). Retweet to help us spread the word!
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Great to see @UtahDepOfHealth now doing newborn screening for #adrenoleukodystropy #ald! kutv.com/newsletter-daily/ut…

Utah newborns now screened for X-linked adrenoleukodystrophy

The Utah Department of Health’s Newborn Screening (NBS) program has added a test for all babies born in the state that detects a debilitating genetic disorder. On Sept. 20, 2020, the NBS program...

kutv.com
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Stop ALD Foundation retweeted
Grey Genetics@GreyGenetics18 Sep 2020
#FactFriday – September is Newborn Screening Awareness Month. In 2016 X-linked Adrenoleukodystrophy was added to the recommended uniform screening panel for newborns. To learn more about this condition, check out these organizations: @StopALD @ALD_Raremark #gcchat #medtwitter
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Stop ALD Foundation retweeted
P. Kenneth Burns@PKBNews7 Sep 2020
If you happen to be on the boardwalk, I’ll be the guy in the blue shirt and New Jersey flag facemask. I am the South Jersey Repoeter after all; gotta rep the brand. @WHYYNews
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Deadline extended to Aug 3, 2020!
Stop ALD Foundation@StopALD18 Jul 2020
Are you a patient or caregiver for someone with a rare disease? Take this survey by July 19 from @EveryLifeOrg so they can help raise visibility of the cost of rare diseases. everylifefoundation.org/burd…
Are you a patient or caregiver for someone with a rare disease? Take this survey by July 19 from @EveryLifeOrg so they can help raise visibility of the cost of rare diseases. everylifefoundation.org/burd…
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Great to see coverage of more states adopting newborn screening for ALD! newsandtribune.com/community…
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