The Myelin Project Content Managers RSS Feed

LETTER FROM THE PRESIDENT

Wed, 23 Jun 2010 22:27:50 GMT

May 15, 2010 A Letter from the President I would like to introduce myself as the new President of The Myelin Project. Dr. Margaret Weis has resigned as President of The Myelin Project as she has decided that her academic responsibilities preclude her from having time to carry out her duties as President. During her short tenure, the Augusto Odone New Investigator Award was established and we consider this a significant accomplishment. I have been involved with the Myelin Project and served on its Board of Directors since its inception in 1989, after having met Augusto Odone in 1987. Serving on the Board with a very devoted group of people has been inspirational and I look forward to continuing the work of The Myelin Project. Dr. Ian Duncan, will also continue to be involved in the day-to-day operation of The Myelin Project. He will remain as Chairman of the Scientific Advisory Panel, which is a very specialized and expert group of...

Myelin Project Board Members

Wed, 23 Jun 2010 22:18:00 GMT

OFFICERS

Patti Chapman, Acting President/Secretary,

Pacific Palisades, CA 90272-2041
F: 310-230-4298
email: patti.chapman @ myelin.org

Diane Suchomel, Vice President

President, Cure ALD Foundation
Lincoln, CA 95648

Mr. Don Thompson, Acting Treasurer

Amarillo, TX 79106

DIRECTORS

Mr. John Gernhart

Kingsley, IA

Mrs. Jean Kelley

Branford, CT

OTHER WAYS TO DONATE

Wed, 23 Jun 2010 22:14:05 GMT

Ways to Donate at Work: If you would like to contribute to The Augusto Odone New Investigator Award you can do so by mail ... Visa MC Discover name/amount etc. to By mail: 1449 Calle del Jonela, Pacific Palisades, CA 90272-2041 Combined Federal Campaign - The Myelin Project is a member organization of the Combined Federal Campaign. Our CFC number is 11222. Federal employees will find the Myelin Project under Children's Medical Charities Section Click here to visit the site! Independent Charities of America and Local Independent Charities The Myelin Project is a member organization of Independent Charities of America and participates in numerous state, city and county charitable campaigns. Click here to visit the site! ...

SCIENTIFIC ADVISORY PANEL

Tue, 22 Jun 2010 22:06:09 GMT

Ian Duncan, BVMS, FRSE, PhD Chair of Scientific Advisory Panel Professor of Neurology Department of Medical Sciences School of Veterinary Medicine University of Wisconsin-Madison 2015 Linden Drive West Madison, WI 53706-1102 USA Email: Duncan @ svm.vetmed.wisc.edu Annik Baron-Van Evercooren, PhD Director, Unit on Disorders of Myelin and Muscle Ion Channels Faculte Pitie-Salpêtrière Laboratoire des Pathologies de la Myeline INSERM CJF 97-11 105 boulevard de l'Hôpital 75634 Paris Cedex 13 FRANCE Email: baron @ ccr.jussieu.fr Wolfgang Bruck , M.D. Professor of Neuropathology Institute for Neuropathology University of Gottingen Robert-Koch-Strabe 40 37075 Gottingen GERMANY Email: wbrueck @ med.uni-goettingen.de Robin J.M. Franklin, BVetMed, BSc, PhD Professor of Neuroscience, MRC Cambridge Centre for Stem Cell Biology and Regenerative Medicine, University of...

Augusto Odone New Investigator Award

Fri, 18 Jun 2010 22:09:17 GMT

Augusto Odone, our founder TREATING THE OTHER FACE OF X-ALD It is a great pleasure to announce the launch of the Augusto Odone New Investigator Award, a project co-funded by The Myelin Project and Olivers Army http://www.oliversarmy.org Young scientists embarking on their research career are invited to submit their plans for a project aimed at finding treatments for adrenomyeloneuropathy (AMN). This debilitating disorder and X-linked adrenoleukodystrophy (X-ALD) are caused by a mutation in the same gene (known as the ALD gene). While X-ALD has been the focus of much research, very little is known about AMN. This new award is intended to help bridge the gap. Most of the visitors to this website know something about X-ALD. This genetic disease affects about one-third of boys who carry the X-ALD gene, causing loss of most normal neurologic functions within one or two years. Fewer than 20 years ago, X-ALD was invariably fatal. Thanks, in part, to The Myelin Project, substantial...

NEWS

Fri, 18 Jun 2010 22:06:52 GMT

MYELIN PROJECT BOARD MEMBER OPENING

Have you or has someone you love been affected by a demyelinating disease such as ALD, AMN,
Krabbe, Alexander's Disease. Would you like to make a contribution and a difference in the direction of myelin repair research? This is not a paid position but an opportunity to serve on a forward-thinking, prestigious Board. Candidates should have a passion for finding a cure, time and/or resources to do successful fundraising, willingness to participate in four Board meetings per year - three via conference call and one on location for the Annual Myelin Project Symposium where scientific information and the latest cutting edge research in myelin repair is presented. Please submit your resume or biography by e-mail to Margaret Weis margaret.weis@myelin.org stating your interest and qualifications.

EVERY LIFE ART CONTEST - Empowering Artists Affected by Rare Disease

Fri, 20 Nov 2009 15:50:58 GMT

Due to several inquiries asking for more time to complete their submission we are extending the deadline to 12/31/09. Please call Julia Jenkins at 415.884.0223 for more information. The Kakkis EveryLife Foundation invites artists to participate in the first annual EveryLife Art Contest. PRIZES: Two Grand Prizes will be awarded in each age group. Age Groups: Children 5-11: $100 Visa Gift Card Teens 12-17: $250 Visa Gift Card Adults 18+: $500 Visa Gift Card Each Grand Prize winner will also receive a Flip Video camera. Winners will use the Flip Video to record their story about being an artist affected by a rare disease. The artists' video stories will be posted on the Kakkis EveryLife Foundations Website. Awards for Outstanding Art: All contestants with works of outstanding art will receive a $25 Visa Gift Card. ELIGIBILITY: The EveryLife Art Competition is open to all artists affected by a Rare Disease ages...

How To Submit a Grant

Tue, 27 Oct 2009 16:04:52 GMT

The Myelin Project is not currently accepting any new research grant applications at this time. Guidelines for Submitting Grant Proposals to The Myelin Project Investigating Novel Treatments for Demyelinating Diseases 1. Purpose. The Myelin Project seeks to fund preclinical or Phase I trials focused on novel treatment strategies for altering the course of, or repairing the damage caused by myelin diseases, including multiple sclerosis and the leukodystrophies. This latter category includes metachromatic leukodystrophy, adrenoleukodystrophy, as well as Refsum's, Krabbe's, phenylketonuria, Canavan's, Pelizaeus-Merzbacher's, and Alexander's diseases. 2. Research Objectives. We intend to stimulate novel research on MS and the leukodystrophies, with the twin objectives of stopping their progression and regenerating the myelin sheath, whose loss is these diseases' common trait. Our grants will finance the cost of pre-clinical/clinical studies necessary for proof of concept, initial...

Wed, 07 Oct 2009 22:07:33 GMT

Demyelinating Diseases In Brief

Wed, 23 Sep 2009 15:02:57 GMT

Demyelinating diseases are those in which myelin is the primary target. They fall into two main groups: acquired diseases (i.e., multiple sclerosis) and hereditary neurodegenerative disorders (i.e., the leukodystrophies). Although their causes and etiologies are different, they have the same outcome: CNS demyelination. Without myelin, nerve impulses are slowed or stopped, leading to a constellation of neurological symptoms. Axons with normal myelin Demyelinated axons: Nerve impulse conduction slows or stops completely Acquired Diseases The most common of these is multiple sclerosis (MS), which usually manifests itself between the 20th and 50th years of life. Current estimates are that approximately 2.5 million people worldwide have MS, with between 250,000 and 350,000 cases in the United States, 50,000 cases in Canada, 130,000 cases in...

Augusto Odone New Investigator Award

Tue, 08 Sep 2009 18:49:52 GMT

Name of Award: Augusto Odone New Investigator Award Purpose: To encourage promising young scientists to pursue a career in research aimed at investigating the pathogenesis and treatment of adrenomyeloneuropathy. Preference will be given to projects that are translational/clinical in nature. Funding: The award will be co-funded by The Myelin Project and Oliver's Army http://www.oliversarmy.org/ Applicant Description: 1. Applicants must have an independent academic or research track position at a junior level, by the time of award activation. The applicant must meet institutional requirements for submission of an extramural, peer reviewed grant proposal. 2. Applicants may have no more than seven years of active faculty/staff appointment prior to award activation. 3. Postdoctoral research fellows are ineligible for this award unless they will have faculty/staff appointment at the time of activation. 4. Applicants may have no more than $175,000 per year in other extramural...

LORENZO ODONE

Wed, 08 Jul 2009 21:21:36 GMT

In Loving Memory of Lorenzo Odone 5/29/1978 to 5/30/2008 It is with great sadness that we announce that Lorenzo Odone finally lost his battle with adrenoleukodystrophy and went to heaven to be with the angels on May 30, 2008. Both his father Augusto and his life-long friend Oumouri Hassane were at his side when he passed away. Lorenzo died one day after his 30th birthday. Lorenzo Odone, whose story was told in the 1992 Hollywood movie Lorenzo's Oil, starring Susan Sarandon and Nick Nolte, has died in Fairfax, VA, one day after his 30th birthday. Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) in 1984, aged 6. Doctors told his parents that the neurological disease would swiftly deprive him of all his faculties and lead to his death within a maximum of two years. Odone's parents, Augusto and Michaela, despite having no scientific background, decided to research the rare genetic disorder. Their struggle and ultimate triumph, when they found an oil that stopped the...

Science and Society Gala Sponsorship Information

Tue, 09 Jun 2009 18:15:10 GMT

For more information on Gala Sponsorship and price packages
/attachments/wysiwyg/1/GalaSponsorshipPkg2009.pdf

Science and Society Gala - Toronto

Tue, 09 Jun 2009 17:40:47 GMT

Myelin Project Overview

Wed, 27 May 2009 15:04:50 GMT

Mission Statement: The Myelin Project exists to end human suffering from demyelinating diseases. The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and by acquired diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide. The film tells the real-life story of Lorenzo Odone and his parents, Augusto and Michaela, inventors of the oil and founders of The Myelin Project. Behind the Myelin Project is a multinational gathering of families struck by one demyelinating disease or another. Refusing to accept the conventional view that science cannot be hurried, they resolved to advance the moment when myelin could be restored. They have done this by creating a framework in which researchers can cooperate effectively, by...

Scope and Strategies

Tue, 26 May 2009 19:00:22 GMT

Since myelin loss leads to the reduction or blockage of nerve impulse conduction, myelin regrowth would logically restore conduction in diseases for which therapies capable of halting demyelination have already been found (e.g., phenylketonuria, Refsum's disease, which are treatable, mainly through restricted diets). But regenerating myelin may also be beneficial in demyelinating diseases for which no effective treatment has been developed (e.g., multiple sclerosis). Indeed, the new myelin may well be able to withstand attack by the primary demyelinating agent, either permanently or for a long period of time. Strategies To attain its objectives, The Myelin Project relies on three major strategies: prompting researchers to work as a team and coordinating their research efforts, promoting interaction between researchers and laypeople, and rapid financing of practically oriented experiments. The annual meetings of the Work Group as well as several teleconferences during the year provide...

Hereditary Neurodegenerative Disorders

Tue, 26 May 2009 18:59:03 GMT

This category includes the eight identified leukodystrophies metachromatic leukodystrophy, Refsum's disease, adrenoleukodystrophy, Krabbe's disease, phenylketonuria, Canavan disease, Pelizaeus-Merzbacher disease and Alexander's disease. The first six are storage disorders. The lack or the malfunctioning of an enzyme causes a toxic buildup of chemical substances. In Pelizaeus-Merzbacher disease myelin is never formed (dysmyelination) because of a mutation in the gene that produces a basic protein of CNS myelin. The etiology of Alexander's disease remains largely unknown.

The clinical course of hereditary demyelinating disorders, which usually tend to manifest themselves in infancy or early childhood, is tragic. Previously normal children are deprived, in rapid progression, of sight, hearing, speech, and ambulation. Equally tragic is their prognosis: death within a few years.

A number of government agencies and private foundations currently support research on various myelin diseases. Some efforts focus on identifying the cause of individual diseases; others are directed toward developing therapies for arresting disease progress or preventing onset.

In contrast, little attention is being given to the problems of repairing damage already done by the disease and of restoring lost function. Laboratories working on remyelination are relatively few in number and their programs are under-funded. In addition, rivalry among researchers is intense. Laboratories tend to work in isolation, learning of each other's progress through medical journal articles which are usually published a year or two after experiments are completed. This fragmented approach is clearly unsuitable to regenerating CNS myelin, a complex task which requires multi-disciplinary skills.

Myelin Project Overview

Tue, 26 May 2009 18:56:49 GMT

The Myelin Project headquarters has recently been moved to Amarillo, Texas where it is housed on the Texas Tech University Health Sciences Center campus in the Laura W. Bush Womens Research Institute. The Myelin Project has branches in Germany, Italy, Canada and the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France. Project President, Margaret Weis, receives minimal compensation, members of the Board receive no compensation. In Britain, Frances Germany, Italy and Canada Project Board members are also volunteers.

Using a motivated, time-conscious approach to attain specific goals, The Myelin Project has set up a Work Group from among the top international laboratories specializing in myelin repair. The Work Group includes researchers from Yale University and the University of Wisconsin at Madison in the U.S., the Istituto Superiore di Sanità and San Raffaele Scientific Institute in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, the Queen's University at Kingston in Canada, the University of Cambridge in the United Kingdom, and the Max-Planck-Institut in Germany.

The Myelin Project targets its funds toward clinically oriented experiments on the cutting edge of remyelination research. Basic research and studies directed toward the advancement of science for science's sake are excluded from Project financing.

We would be grateful if you would consider helping us. Supporting our work will not only be humanitarian, but will also make good business sense:

We aim to keep our administrative costs to no more than 20% of total receipts, depending on the year.
Your donation will go toward financing practically oriented experiments conducted within the framework of a coherent overall plan. All research proposals are reviewed in advance by our panel of leading experts in the field.
We promise you that your donation will be well-spent, funding those proposals that are most likely to yield clinically relevant results.

GOT THE NERVE ?????

Thu, 07 May 2009 17:36:42 GMT

6th ANNUAL GOT THE NERVE TRIATHLON May 23, 2009 Mount Gretna, Pennsylvania 500 yard swim - 16 mile bike - 5 K run Mount Gretna, PA Got The Nerve is a sprint triathlon, with a 500 yd. swim in Mt. Gretna Lake, a 16 mi. bike ride on country roads through both Lebanon & Lancaster Counties and a 5K run on a nearby FLAT Rails-to-Trails path. Chris Kaag, Founder and Director of Got the Nerve http://www.gotthenerve.org/ Proceeds benefit The Myelin Project THANK YOU SPONSORS Sponsors

2008 Research Progress Reports

Tue, 05 May 2009 15:03:37 GMT

2008 News From The Laboratory: Dr. Ian Duncan’s group from the University of Wisconsin summarized three new (and as yet unpublished) projects. Two of them involved research on a mutant mouse (op) that is not able to develop certain cell types that are important in bone remodeling and in the immune system. The first project studied the numbers of microglial cells, which are part of the immune system in the central nervous system. The microglia are important in diseases of brain inflammation, such as multiple sclerosis. Dr. Duncan’s lab found that there are fewer microglial cells in the white matter of op mice as compared to control mice. However, the numbers of microglia in the grey matter were not different between the two groups. While microglia in both mutant and control mice responded to a wound in the cerebral cortex (part of the brain grey matter), the change in the op mice was less than the control. These findings make the op mouse a useful model in which to explore the role of...