Press Releases - News for The Myelin Project

The top 50 press releases in our database are displayed below.

13 Record(s) Found. Displaying Page 1:

Making rare diseases a public-health and research priority
Release Date: 17-Jun-08 Author or Contact: Candace Root Category: adrenoleukodsytrophy Subcategory: rare diseases
Editorial 1972 www.thelancet.com Vol 371 June 14, 2008 Making rare diseases a public-health and research priority On May 30, a 30-year-old man with adrenoleukodystrophy died of pneumonia. Lorenzo Odone was a remarkable individual from a remarkable family. He lived for 24 years after his adrenoleukodystrophy was diagnosed (20 years longer than predicted). His longevity might have been, in part, due to the combination of erucic and oleic ...
Click to read Making rare diseases a public-health and research priority

Rare Diseases What's next?
Release Date: 17-Jun-08 Author or Contact: Candace Root Category: myelin disease reserach Subcategory: rare diseases
Rare diseases: what’s next? Rare diseases are life-threatening or chronically debilitating diseases with a prevalence lower than one per 2000 in the European Community or one per 1250 in the USA. Only a few of the 5000 recognised rare diseases have a prevalence close to those limits, and most of them are much rarer, such as muscular dystrophy, or haemophilia, and others are so uncommon that they are defi ned as being ultra-rare, such as ...
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Zymenex gets FDA approval of Investigational New Drug
Release Date: 16-Jun-08 Author or Contact: Candace Root Category: MLD Subcategory: Press Release
Zymenex has received FDA approval of its Investigational New Drug (IND) application for its enzyme Metazym, which is intended for use in the treatment of the rare, lysosomal disease Metachromatic Leukodystrophy (MLD). The company is now preparing for Phase 2 clinical trials in the USA.
Click to read Zymenex gets FDA approval of Investigational New Drug

Metachromatic Leukodystrophy Clinical Trial
Release Date: 1-Jun-08 Author or Contact: Candace Root Category: MLD Subcategory: Press Release
To those with new diagnosis of Metachromatic Leukodystrophy: Your child may be able to participate in the upcoming Metazym Clinical Trial to be conducted at the University of North Carolina (UNC). Screening for 10-12 children is now in progress. Please contact Dr. Maria Escolar at (919)966-4810 for more information.
Click to read Metachromatic Leukodystrophy Clinical Trial

LORENZO ODONE PASSED AWAY MAY 30, 2008
Release Date: 30-May-08 Author or Contact: Candace Root Category: adrenoleukodsytrophy Subcategory: Lorenzo Odone
It is with great sadness that we announce that Lorenzo Odone died today in his sleep at home with ihs father Augusto Odone and friend Omouri Hassane at his side.
Click to read LORENZO ODONE PASSED AWAY MAY 30, 2008

New Class of Drugs for Treatment of Multiple Sclerosis
Release Date: 21-May-08 Author or Contact: Candace Root Category: myelin disease reserach Subcategory: Multiple Sclerosis
Prog Drug Res. 2008;66:361, 363-81.Links Ascomycete derivative to MS therapeutic: S1P receptor modulator FTY720. Hiestand PC, Rausch M, Meier DP, Foster CA. Novartis Pharma AG, Lichtstrasse 35, 4002 Basel, Switzerland. Fingolimod (FTY720) represents the first in a new class of immune-modulators whose target is sphingosine-1-phosphate (S1P) receptors. It was first identified by researchers at Kyoto University and Yoshitomi ...
Click to read New Class of Drugs for Treatment of Multiple Sclerosis

StopALD Foundation Funds Gene Therapy
Release Date: 19-May-08 Author or Contact: Candace Root Category: adrenoleukodsytrophy
The research and clinical trial discussed in the article below was sponsored in part by The Stop ALD Foundation. To see all recent Stop ALD Foundation news please click here. Published online 30 October 2007 \| Nature \| doi:10.1038/news.2007.204 Gene therapy sees early success for neurodegenerative disease Treatment uses HIV to insert genetic material into ALD patients. Declan Butler Two children with a common ...
Click to read StopALD Foundation Funds Gene Therapy

NORTHWOOD SCHOOL STUDENTS RAISE MONEY FOR MYELIN DISEASE RESEARCH
Release Date: 12-May-08 Author or Contact: Candace Root Category: myelin disease reserach Subcategory: Press Release
NEWS 10 NOW NEWS LAKE PLACID, N.Y. -- Students at Northwood School spent their Saturday afternoon raising money for a disease many people have never even heard of. "Picture electrical cord. The rubber that's on the cord insulates those wires, well the myelin sheath Insulates all our nerves in our body," said Karen Fleming, Northwood's school nurse. People with a damaged myelin may develop multiple sclerosis or other myelin ...
Click to read NORTHWOOD SCHOOL STUDENTS RAISE MONEY FOR MYELIN DISEASE RESEARCH

Zymenex sells clinical candidate Metazym to Shire
Release Date: 8-May-08 Author or Contact: Candace Root Category: MLD Subcategory: Zymenex
PRESS RELEASE April 24th, 2008 Zymenex sells clinical candidate Metazym to Shire for 135 MUSD Zymenex has – with the financial support of BankInvest Biomedical Venture and Sunstone Capital – achieved successful early clinical development of a therapeutic candidate Metazym against the rare, lethal and genetically caused, disease MLD, which most often affects children at a very young age. This has now resulted in a sale of the ...
Click to read Zymenex sells clinical candidate Metazym to Shire

Zymenex gets US Orphan Approval
Release Date: 18-Apr-08 Author or Contact: Candace Root Category: MLD Patients Subcategory: Zymenex
Good news for MLD patients
Click to read Zymenex gets US Orphan Approval

DEVELOPMENT OF NEWBORN SCREENING TEST FOR ADRENOLEUKODYSTROPHY
Release Date: 7-Mar-08 Author or Contact: Candace Root Category: Recent News Subcategory: Adrenoleukodystrophy
When the Myelin Project was founded by Augusto and Michaela Odone, the little was known about ALD. Now, twenty years later, we not only know a great deal about the disease, we have treatments that, however imperfect, offer hope of survival for boys who carry the ALD gene. As published in 2005, Lorenzo’s Oil significantly reduces the risk of childhood cerebral ALD in boys carrying the ALD gene. Studies are now underway to discover whether ...
Click to read DEVELOPMENT OF NEWBORN SCREENING TEST FOR ADRENOLEUKODYSTROPHY

New Developments Therapy for Lorenzo's Oil Boys
Release Date: 31-Oct-07 Author or Contact: Candace Root Category: myelin disease reserach Subcategory: Adrenoleukodystrophy
Doctors have for the first time used gene therapy to treat two boys with the rare nervous disorder made famous through the film "Lorenzo's Oil". Treatment for adrenoleukodystrophy has mainly involved bone marrow transplant, but this can be problematic due to lack of donors and rejection by the body. French doctors have now managed to modify the boys' own bone marrow. They unveiled their findings at a summit of the European Society of ...
Click to read New Developments Therapy for Lorenzo's Oil Boys

Early Detection Called Key to Effectiveness
Release Date: 1-Jan-05 Author or Contact: Candace Root Category: myelin disease reserach Subcategory: Adrenoleukodystrophy
New research offers scientific vindication for the parents whose fight to save their ailing son inspired the 1992 movie 'Lorenzo's Oil." It comes too late to help the real-life Lorenzo, who is nearly totally paralyzed, but suggests that the oil could help save future generations of boys from the same, fatal nerve disorder.
Click to read Early Detection Called Key to Effectiveness

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Press Releases - News for The Myelin Project