• 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

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

Hammerfest 2013 was a Great Success!

August 6, 2013 by Brian's Hope

Hammerfest 2013 was a great success! A heartfelt thank you to our hosts at the Owenego, the triathletes and Fun Run participants, our steadfast volunteers, sponsors and donors. A major highlight of the day was a proclamation by the General Assembly of the State of Connecticut citing September 15th, 2014 as “Brian Kelley” Day, for …Read More

Filed Under: Brian's Hope News, Hammerfest Triathlon, Thank You for the Support

A Huge Thank You

February 5, 2013 by Brian's Hope

A huge Thank You from our family to those who rallied likes for our Page and our Cause. And a Thank You and welcome to our new “Fans”. We are working towards the day when no child will experience the devastation of adrenoleukodystrophy (ALD).

Filed Under: Brian's Hope News, Support, Thank You for the Support

Thank You for the Support!

January 31, 2013 by Brian's Hope

We are looking forward to 500 likes! We want to thank you for your support and good wishes as Jean and Brian visited the Legislative Office Building last week. Please, share our this page and story with your family and friends, as we are looking to double our likes in two weeks, ahead of our …Read More

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

Public Health Committee Meeting in Hartford, CT for Brian’s Hope

January 24, 2013 by Brian's Hope

GREAT NEWS!!! We made a trip to Hartford today and met with Senator Terry Gerratana and Representative Susan Johnson, the co-chairs of the Public Health Committee in Hartford to introduce the newborn screening for adrenoleukodystrophy (ALD). We are hoping it will be added to the existing newborn screening panel in CT, a life-saving opportunity. We …Read More

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

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