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A letter from Professor Alfried Kohlschuetter(0)

September 28, 2016

I am very grateful for the magnificent work that Elisa Seeger, Jean Kelley, Janice Sherwood, Gina Cousineau and many others are continuing to do in getting New Born Screening (NBS) for ALD throughout the United States and the resultant success. The rest of the world is awake and working on their individual country’s requirements to… Read More ›

To Be of Use

To Be of Use by Marge Piercy   The people I love the best Jump into work head first Without dallying in the shallows And swim off with sure strokes almost out of sight They seem to become natives of that element, The black sleek heads of seals Bouncing like half-submerged balls.   I love… Read More ›

Gene Therapy — The time is now: Nick Leschly at TEDxBoston

“Forget the price. What’s the value of that treatment?” What if we could fix a patient’s own cells and cure their disease once and for all instead of treating a chronic illness over their lifetime? The solution exists, but it’s expensive. Nick Leschly, chief bluebird, explains how biotechnology can deliver corrective genes into a patient’s… Read More ›

ALDConnect One Page Summaries

What is ALD? How is ALD inherited? Symptoms of ALD/AMN What Can I do to Stay Healthy? Current Treatments for ALD What is ALD? ALD stands for Adrenoleukodystrophy This combined word is made up from – Adreno – Leuko – Dystrophy Adreno refers to the Adrenal Glands which are found on the top of each… Read More ›

Informational/education videos from bluebird bio channel

What are genes? What is gene therapy? Gene therapy for CCALD Stem cell transplant Acknowledgement: bluebird bio

ALD Life Information leaflets

These leaflets cover all aspects of living with the ALD gene and are generously provided here for your information courtesy of ALD Life: Practical Information for Males with Symptomatic ALD Practical Information for Males with Asymptomatic ALD Practical Information for Men with AMN Practical Information for Women with AMN Practical Information for Female Carriers of… Read More ›

Together We Can #SaveTheBoys

View: Together We Can #SaveTheBoys

ALDConnect Doctor-Patient Webinar #5

View the Webinar: ALD Connect’s #SAVETHEBOYS Summer Campaign

ALDConnect Patient Portal

Join the ALD Connect Patient Portal and be part of a global effort to fight ALD/AMN. Your information can help doctors and researchers to shape the direction of research and care. For perhaps the first time in the history of this disease, your experiences, your concerns, and your ideas will take centre stage. You know… Read More ›

ALDConnect Doctor-Patient Webinar #4

View the webinar: Newborn Screening & Implementation