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Discussing Newborn Screening with Fifth Graders at Green Acres School in North Haven

November 6, 2013 by Brian's Hope

We had a great day with Mrs. Savoia and Mrs. Schingh’s fifth graders at Green Acres School in North Haven, discussing the passage of our bill and the importance of newborn screening, and the addition of ALD to the existing newborn screening panel.

Filed Under: Brian's Hope News, Support

Sad News

October 24, 2013 by Brian's Hope

Sad news today – Augusto Odone, the World Bank economist who defied the medical establishment to treat his son Lorenzo with ’Lorenzo’s Oil’ has passed away. Odone gained recognition with his wife Michaela for their efforts to keep Lorenzo alive after they learned of his ALD diagnosis and its devastating progression. The Odones’ story was …Read More

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

Brian’s Hope: Hammerfest Triathalon Part of ‘ripple effect’ of Foundation Named After Brian Kelley

September 23, 2013 by Brian's Hope

Thank you to The Shoreline Times for this great article about the “ripple effect” of Brian’s Hope! Read it here.

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

Ceremonial Bill Signing for ALD Screening with Governor Malloy in Hartford

August 23, 2013 by Brian's Hope

We continue to work towards a day when no little boy will have to face the challenges Brian has and we’re now one step closer to making newborn screening for ALD a reality in Connecticut! In August, the Kelley family was honored to attend the ceremonial bill signing with Governor Malloy in Hartford. The newborn …Read More

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

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

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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

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