• About
    • Mission
    • Meet Brian
    • Meet the Kelleys
    • Brian’s Artwork
    • Photo Gallery
  • ALD
    • What is ALD?
    • Diagnosis & Treatment
    • Newborn Screening FAQs
    • Support Newborn Screening
    • Educational Videos
    • Additional Resources
  • Events
    • Hammerfest Triathlon
    • Lions Golf
    • Hook & Slice
  • Take Action
    • Volunteer/Sponsor
    • Donate
  • News
  • Contact

FDA Grants Breakthrough Therapy Designation to Lenti-D™ for the Treatment of Cerebral Adrenoleukodystrophy

May 24, 2018 by Brian's Hope

We have incredible news to share! Massachusetts-based bluebird bio, a leader in the research and treatment of cancer and severe genetic diseases, just received FDA “Breakthrough Therapy” designation for their Lenti-D™ gene therapy for patients with cerebral adrenoleukodystrophy (CALD). This designation will allow for expedited development and review of the treatment protocol, meaning it is …Read More

Filed Under: In the News...

bluebird bio Announces Cerebral ALD Presentation at AAN Annual Meeting

March 9, 2016 by Brian's Hope

Brian’s Hope is proud to share that bluebird bio in Cambridge, MA has announced that interim data for the treatment of cerebral adrenoleukodystrophy (CALD) will be presented during the Clinical Trials at the American Academy of Neurology (AAN) 2016 Annual Meeting on April 20, 2016. Read the complete press release!

Filed Under: Additional Resources, Brian's Hope News, In the News..., Progress of Newborn Screening

First Baby with ALD Identified in CT

March 1, 2016 by Brian's Hope

It is bittersweet but good to know the process for ALD newborn screening is working in CT. In January, our first CT baby to have ALD was identified. The child is in the care of specialists and will receive the appropriate monitoring and treatments, which if given in the early phase, dramatically improve the outcome …Read More

Filed Under: Brian's Hope News, In the News...

ALD is Added to the Recommended Uniform Screening Panel (RUSP)!

February 19, 2016 by Brian's Hope

On February 17th, 2016, the Secretary of the Department of Health & Human Services, Silvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. The addition of ALD to the RUSP will expedite the process of adding ALD …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening, Support, Thank You for the Support

Connecticut Newborn Screening Update on FOXCT

September 28, 2015 by Brian's Hope

We are grateful to FOXCT’s Sarah Cody’s follow-up piece on newborn screening for ALD in CT. Hoping CT will be ready to test in a few months. If you don’t look for it you won’t find it until it’s too late. We advocates will be working on this until all states are testing. It shouldn’t …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening

  • 1
  • 2
  • 3
  • Next Page »

Updates

Latest News on ALD

Recent Posts

  • FDA Grants Breakthrough Therapy Designation to Lenti-D™ for the Treatment of Cerebral Adrenoleukodystrophy May 24, 2018
  • California Begins Newborn Screening for ALD October 3, 2016
  • 20th Annual Hammerfest was an Amazing Success October 3, 2016
  • Press Conference on ALD Newborn Screening Success Held in Connecticut September 2, 2016

Sort By Topic:

Sort by Date:

Newborn Screening
Status Nationwide

ALD
Awareness

Read the
Latest News

Brian’s Hope is a 501(c)(3) Charitable Foundation

Built by the team at Acara Partners