Archive for March, 2016

We’re Now Members of the National Organization for Rare Disorders (NORD)

It is with great excitement we announce that we are now members of the National Organization for Rare Disorders (NORD). Our goal is to increase the exposure of ALD, and to coordinate with other rare disease organizations to advocate for legislation and raise awareness of all rare diseases. NORD is a United States based 501(c)3 tax

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The Leukodystrophy Care Network (LCN) – Establishing Care Guidelines

Imagine your child experiencing an unexplained sudden loss of basic functions – a toddler who once constantly walked and ran suddenly stumbling with each step; an infant with a healthy appetite who once smiled and cooed now crying inconsolably for every waking hour and only eating a few ounces of

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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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Legislation Introduced to Enact Nationwide Newborn Screening for ALD

The Aidan Jack Seeger Foundation is excited to announce a new initiative to expand newborn screening for ALD nationally. With the introduction of S.2641 by the Senator Charles Schumer of New York and companion Bill H.R. 4692 by Congresswoman Yvette Clarke of New York, the Foundation is working to have every state test for ALD in

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Meet Justin D’Agostino: Our first AMN Patient Liaison

Justin D’Agostino was diagnosed with AMN in 2007. His younger brother was diagnosed a year earlier and passed away in 2010. Recently, Justin has endeavored to become active in the ALD community. He is passionate about disease management and quality of life concerns. Justin currently resides in Phoenix, Arizona. He enjoys

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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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