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Archive for January, 2018

Progress Report: Dr. Florian Eichler’s AMN Gene Therapy Pilot Study

Last year, The Myelin Project (in partnership with the Cure ALD Foundation) granted $50,000 to Dr. Florian Eichler’s pilot study of gene therapy in adrenomyeloneuropathy (AMN). Dr. Eichler and his team  established an AMN animal model proof of concept showing a gene therapy approach could provide benefit where no treatment is currently available.

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In Loving Memory of an AMN Hero: Wyatt Zmrzel

It is with great sadness that we announce the passing of Wyatt Zmrzel, son of our Board Member Diane Love, who was tragically killed in a car accident just days after Christmas. Wyatt had AMN and suffered from epileptic seizures but he never let either of those things hold him

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NORD Launches 7,000 Mile Rare Movement

Danbury, CT, Jan. 16, 2018— The National Organization for Rare Disorders (NORD)®, the leading nonprofit organization dedicated to helping the 30 million Americans with rare diseases, today announced its new 7,000 Mile Rare Movement, challenging Americans to pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. The

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Minoryx Therapeutics announces dosing of first patient in phase 2/3 clinical study of MIN-102 in patients with AMN

ADVANCE trial expected to initiate patient recruitment shortly in several other EU countries, followed by the US MATARO, Spain I January 4, 2018 I Minoryx Therapeutics, a company specialized in the development of new drugs for orphan diseases, today announces the initiation of treatment of the first two patients in the ADVANCE

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