@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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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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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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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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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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Stop ALD Foundation retweeted
Akcea Therapeutics@akceatx13 Feb 2020
We’re pleased to welcome Amber Salzman, Ph.D., to our Board of Directors. Amber brings more than 30 years of experience as a leader in the #biopharmaceutical industry & is also a strong #raredisease patient advocate, serving as the president of @StopALD. ir.akceatx.com/news-releases…
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Stop ALD Foundation retweeted
Forge of Souls@forgeofsoulsttv10 Sep 2019
1 in 18000 people are possibly diagnosed with ALD so that means in texas alone in 2019 census is 1600 possibly affected people. The thing is when one of those children are infected they may not get the chance to become a teenager. Please help gain awareness @StopALD
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Stop ALD Foundation retweeted
Forge of Souls@forgeofsoulsttv9 Sep 2019
If you want more information about ALD please look at @StopALD and other Ald foundations across America.
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Stop ALD Foundation retweeted
Forge of Souls@forgeofsoulsttv8 Sep 2019
Also for those who have been in my stream and heard me talk about it there is a website for a foundation about stopping ALD if you want more information about it. stopald.org/what-is-ald also follow their twitter @StopALD

What is ALD? — The Stop ALD Foundation

stopald.org
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Stop ALD Foundation retweeted
ALDConnect@ALDConnect3 Jul 2019
Eve Lapin, co-founder of @StopALD shares her family's experience with #ALD and how #newbornscreening would have saved her son's life. #savetheboys ow.ly/O0tc50uT1hc
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Stop ALD Foundation retweeted
ALDConnect@ALDConnect26 Feb 2019
Let's #SaveTheBoys by getting Congress to require #ALD #newbornscreening for all! Will you take a second to fill out the form to sign a letter to Congress telling them to pass this bill? ow.ly/nuqF30nQizF @aidanslaw @BriansHopeCT @StopALD

Letter to Congress to pass Aidan's Law

We are fighting to pass “Aidan’s Law” (S. 2641 & H.R. 4692), which would require ALD screening in all 50 states. The procedure costs less than $2.50 per infant, and the price will go down as it is...

actionnetwork.org
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ALD Prognosis in Boys Improves Thanks to Research in Boston nbcboston.com/news/local/ALD…
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Stop ALD Foundation retweeted
bearcat Nick@bearcat_nick13 Sep 2018
ALD is a beatable disease, but not if it isn’t caught in time. Newborn screening is paramount! Please RT and raise awareness. @aldfoundation @ALDLife @StopALD @ALDConnect #leukodystrophyAwarenessMonth #TeamNoah #BeatALD #NewbornScreening
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Replying to @UlfUnited
@UlfUnited @StopALD @Myelin_Project @HuntersHopeFDN Please repost and share this video with #ALD newborn screening families. youtube.com/watch?v=kd58guLe…
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