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Tagged as: ALD

Connecticut Becomes 2nd State to Implement ALD Newborn Screening

Since Jean and Dr. Jack Kelley’s son Brian was diagnosed with adrenoleukodystrophy at the age of six, the parents have advocated for a statewide screening program to test all newborns for the disorder in the hope of saving another boy’s life. Three years after a bill mandating ALD be added

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Bluebird Bio’s Gene Therapy Shows Promise for ALD Treatment

By: Ben Fidler April 20th, 2016 BOSTON – Cerebral adrenoleukodystrophy is a rare, crippling neurological disease that leaves its patients, typically boys, severely disabled and ultimately dead in a matter of years. Only painful, dangerous bone marrow transplants can stop the progression of CALD. But while the transplants are effective

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Newborn Screening

“Aidan’s Law” Petition for National ALD Newborn Screening Reaches 50,000 Signatures

Elisa Seeger (pictured above) and The Aidan Jack Seeger Foundation reached a milestone this week when their petition on Change.org received 50,000 signatures supporting “Aidan’s Law” (S. 2641 & H.R. 4692) to enact adrenoleukodystrophy (ALD) newborn screening nationwide. The bill would require newborn screening of ALD in all 50 US

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Forbes Health Writer, Rita Rubin, on ‪Lorenzo’s Oil‬, the Odones, & ‪‎ALD‬ ‪Newborn Screening

Lorenzo’s Oil Could Not Cure Lorenzo, But Newborn Screening Is Expected To Save Others From His Fate By: Rita Rubin Forbes.com Lorenzo’s Oil, a 1992 film starring Nick Nolte and Susan Sarandon, depicted Augusto and Michaela Odone’s quest for a treatment that could save their son Lorenzo from dying of

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bluebird bio to Present Clinical Data on Lenti-D in ALD at AAN 2016 Annual Meeting

CAMBRIDGE, Mass. – bluebird bio, Inc. (Nasdaq: BLUE), a clinical-stage company committed to developing potentially transformative gene therapies for severe genetic diseases and T cell-based immunotherapies for cancer, today announced that interim data from the ongoing Phase 2/3 Starbeam Study (ALD-102) for the treatment of cerebral adrenoleukodystrophy (CALD) will be

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Rare Disease Day 2016

On February 29th, 2016, we attended Rare Disease Day at the State Capitol building in Sacramento, CA with other rare disease advocates to raise awareness of rare diseases and advocate for legislation by targeting the general public, policy makers, public authorities, industry representatives, researchers, and health professionals. In partnership with

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The Myelin Project & Brian’s Hope Grant $50,000 to Dr. Raymond’s Lab

In partnership with Brian’s Hope Foundation, The Myelin Project granted $50,000 to Dr. Gerald Raymond‘s lab at the University of Minnesota. Raymond’ lab works in collaboration with the Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program, the Center for Orphan Drug Research, the Center for Magnetic Resonance Research, and

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