Brians Hope CT

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

[Brians Hope CT @BriansHopeCT]

@TGowdySC That was a beautiful closing message this evening. Thank you. What will our legacies be? I’ll be working on mine.

[Brians Hope CT @BriansHopeCT]

@ALDConnect @StopALD @AldFamily @remember_girls @HuntersHopeFDN @aidanslaw @ALD_Raremark @RunforALD @EmDashily @alexTLCsupport 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

[Brians Hope CT @BriansHopeCT]

Georgia is the 17th state to screen all newborns for ALD. #savetheboys https://t.co/puG334fDJp

[Brians Hope CT @BriansHopeCT]

Thank you to the wonderful health care workers who are putting themselves at risk in the battle against Covid19. #stayhome

[Anna Carvalho @thelastanna]

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

[Brians Hope CT @BriansHopeCT]

ALD community is blessed to have @bluebirdbio dedicated to our disease. @drjackkelley Brian and Brody💙#aldnewbornscreening

[Genetix Biotherapeutics @genetix_biotx]

“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

[Brians Hope CT @BriansHopeCT]

Excited to share Michigan is now screening for ALD!

[Genetix Biotherapeutics @genetix_biotx]

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!

[Brians Hope CT @BriansHopeCT]

@drjackkelley

[Tom Pelissero @TomPelissero]

#49ers FB Kyle Juszczyk will get a second opinion from Dr. John Kelley on his sprained MCL, source said. The team says he's expected to be out about 4-6 weeks, but my understanding is there's some hope Juszczyk might be able to beat that timetable.

[Brians Hope CT @BriansHopeCT]

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_biotx]

For the Kelley family (@BriansHopeCT), newborn screening awareness month really strikes a chord. We’re inspired by Brian’s journey. #newbornscreen #2019NBS

[Brians Hope CT @BriansHopeCT]

We will get there one state at a time if need be.

[Genetix Biotherapeutics @genetix_biotx]

How many states include adrenoleukodystrophy as a part of their newborn screening panel? Come back tomorrow to find out the answer!

[Brians Hope CT @BriansHopeCT]

Newborn screening month...
What is your state testing for?

[Genetix Biotherapeutics @genetix_biotx]

Interested in which newborn screening tests are required in your state? Click below to see a complete list for each state! https://t.co/xJGhwuyRKh
#newbornscreening #2019NBS

[Brians Hope CT @BriansHopeCT]

So grateful for the work bluebird is doing.

[Genetix Biotherapeutics @genetix_biotx]

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

[Brians Hope CT @BriansHopeCT]

@bluebirdbio @TriangleBIZJrnl You are flocking awesome! Thank you for your strong presence at the Hammerfest Triathlon, stopping the progression of ALD. It was a fantastic day. #savetheboys

[Brians Hope CT @BriansHopeCT]

@JenHelfer Great work ladies. Thanks for being with us today. And all the other birds flying around Hammerfest on this beautiful day!

[Brians Hope CT @BriansHopeCT]

@andygrammer awesome concert at @TODAYshow Great ballad for the ALD community where we are battling to save the lives of boys fighting a life threatening neurological disease. You inspire so many. #dontgiveup

[Michele Rhee @michelerhee]

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

[Brians Hope CT @BriansHopeCT]

Thanks to Elisa as she continues to lead the way. #savetheboys

[Stephanie Fischer @RarePOV]

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

[Brians Hope CT @BriansHopeCT]

What a powerful message...

[Genetix Biotherapeutics @genetix_biotx]

Today we’re flying high: a new https://t.co/Nxt6Xhu5gv 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

[Brians Hope CT @BriansHopeCT]

Grateful for @bluebirdbio and their commitment to ALD.

[Genetix Biotherapeutics @genetix_biotx]

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

[Brians Hope CT @BriansHopeCT]

So glad to hear this!