@BriansHopeCT

Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to when no child experiences the devastation of adrenoleukodystrophy (ALD)

Joined November 2012
  • Tweets562
  • Following428
  • Followers299
66Media
Georgia is the 17th state to screen all newborns for ALD. #savetheboys instagram.com/p/CD1W1EsJuA0/…
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Thank you to the wonderful health care workers who are putting themselves at risk in the battle against Covid19. #stayhome
Anna Carvalho@thelastanna25 Mar 2020
I am an emergency physician. My increased exposure means that I have chosen to isolate from my family, to keep them safe. This is how I see my daughters (pictured with their cousins, with whom they’re staying). If I can do this, you can stay home. #stayhome #BCdocs #COVID19
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ALD community is blessed to have @bluebirdbio dedicated to our disease. @drjackkelley Brian and Brody💙#aldnewbornscreening
Genetix Biotherapeutics@genetix_biotx7 Nov 2019
“To be truly successful, we must fully understand and consider the needs and preferences of the communities we serve.” That’s one of the many reasons #ThisIsPersonal
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Excited to share Michigan is now screening for ALD!
Genetix Biotherapeutics@genetix_biotx24 Oct 2019
Did you know that #newbornscreening in Michigan began back in 1965? The state now screens for a total of 56 conditions, including the 2019 addition of ALD! We raise a wing to you, Michigan!
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It was a wonderful day in the nest! We were honored to be invited. The ALD community is grateful for the great work you are doing. And we are blessed with Brian, our inspiration. 💙
Genetix Biotherapeutics@genetix_biotx29 Sep 2019
For the Kelley family (@BriansHopeCT), newborn screening awareness month really strikes a chord. We’re inspired by Brian’s journey. #newbornscreen #2019NBS
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We will get there one state at a time if need be.
Genetix Biotherapeutics@genetix_biotx26 Sep 2019
How many states include adrenoleukodystrophy as a part of their newborn screening panel? Come back tomorrow to find out the answer!
12%3
12%13
6%28
69%not enough
16 votes • Final results
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Newborn screening month... What is your state testing for?
Genetix Biotherapeutics@genetix_biotx22 Sep 2019
Interested in which newborn screening tests are required in your state? Click below to see a complete list for each state! babysfirsttest.org/newborn-s… #newbornscreening #2019NBS
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So grateful for the work bluebird is doing.
Genetix Biotherapeutics@genetix_biotx19 Sep 2019
September is Newborn Screening Awareness Month, and here in the nest we are dedicated to this critical health initiative year-round, especially as it relates to cerebral adrenoleukodystrophy. #2019NBS #newbornscreening #wordsofthebirds
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Brians Hope CT retweeted
Michele Rhee@michelerhee22 Jun 2019
One of the panelists today asked me if I searched my #RareDisease. When I said I didn’t, she gently recommended I do in case there were advances. So different from when I was 1st diagnosed & my doc told me he’d read everything so I didn’t need to. #LivingRareForum
National Organization for Rare Disorders (NORD)
@RareDiseases22 Jun 2019
Patients used to be told not to google their #raredisease. At #LivingRareForum, our Caring for Rare speakers are telling physicians & students to encourage their patients to google! Encourage them to find patient organizations that can help them.
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Thanks to Elisa as she continues to lead the way. #savetheboys
Stephanie Fischer@RarePOV5 Jun 2019
Elisa Seeger founded @aidanslaw in 2012 after her son passed away from #ALD, which could have been detected by #NewbornScreening & treated. Only 11 states test for ALD even though it was added to the RUSP in 2016. “A child’s life should not depend on their zip code.” #BIO2019
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What a powerful message...
Genetix Biotherapeutics@genetix_biotx29 May 2019
Today we’re flying high: a new bluebirdbio.com has hatched! Every part of this new digital nest makes up our collective past, present, and future as recoders. Click the link in our bio to see how, together, we can #recodethestory and #recodeforlife
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Grateful for @bluebirdbio and their commitment to ALD.
Genetix Biotherapeutics@genetix_biotx26 Apr 2019
We're proud of the global clinical studies we’re conducting to investigate the impact of treatment on the progression of cerebral ALD, a rare, genetic disorder which leads to rapidly progressive and irreversible loss of neurologic function. #CALD #PAS2019
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So glad to hear this!
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Help us #savetheboys in every state.
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
Grateful to @bluebirdbio for all they do for the ALD community.
Genetix Biotherapeutics@genetix_biotx14 Feb 2019
Replying to @BriansHopeCT
@BriansHopeCt @StopALD @Myelin_Project @aldconnect We’re all in for patients - That’s a fact you can’t deny. Together we laugh, we cry, we build, we fly … A perfect match! Made by design. So here it is – the bottom line: Will you be our Valentine? #thisispersonal
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Brians Hope CT retweeted
ALDConnect@ALDConnect13 Dec 2018
Minoryx hit its target of 116 #AMN men for its MIN-102 trial: 90 in Europe and 26 in the US. Minoryx credited #ALD patients, families, and advocacy groups for the success. Minoryx to explore additional trials. Great work ALD community! ow.ly/hnty30mYyxT

Minoryx Therapeutics announces early completion of patient randomization in the ADVANCE trial: a...

Minoryx Therapeutics, a company specializing in the development of new drugs for orphan diseases, today announces that it has completed patient randomization of its phase 2/3 clinical trial of...

biospace.com
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Happy to know that Canada is considering adding to its newborn screening panel. If you know anyone in the Maritime provinces please encourage them to sign the petition.
The Myelin Project@Myelin_Project9 Dec 2018
Leukodystrophy mother, Marie-Michele Arpin from Canada, created a petition in support of newborn screening in New Brunswick, Nova Scotia, and Prince Edward Island for her son's rare leukodystrophy. Show your support and sign the petition today: bit.ly/2UxmMR8.
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Brians Hope CT retweeted
TeamALD@ald_team27 Nov 2018
10 US states (bit.ly/2Ar6v7q) screen for #adrenoleukodystrophy That’s 1,350,000 newborns/year, and 36% of all US newborns. With a birth incidence = 1:15,000 (M+F) each year 45 ALD boys are identified. Early diagnosis leads to life-saving interventions!
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Our greatest newborn screening advocate. Thanks for doing the lions share Elisa!
J@NoNeinNeeNon3 Nov 2018
Elisa of @aidanslaw giving a #NBS update at @ALDConnect Annual Meeting. #ALD2018
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