The Myelin Project

Science and Society Gala - Toronto

Tue, 09 Jun 2009 18:04:23 GMT

Science and Society Gala - Toronto
Start Date: 23-Oct-09 7:00 PM
End Time: 23-Oct-09 11:00 PM
Location: Four Seasons Hotel, Toronto, Toronto, Ontario M5R 2G1
Speaker:

Event Details:

Sponsor Information is available at /attachments/wysiwyg/1/GalaSponsorshipPkg2009.pdf

Four Seasons Hotel, Toronto

21 Avenue Road

Toronto, Ontario Canada M5R 2G1

The Myelin Project Home Giveaway Raffle

noemail@myelin.org — Wed, 01 Jul 2009 14:38:38 GMT

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Another Wayne Osteen Home Giveaway Benefiting The Myelin Project. Wayne Osteen a local home builder in Amarillo, Texas and is building a new home that will be raffled off as a fund raiser to benefit The Myelin Project. The home is under construction in the new City View addition of Amarillo, Texas. The home will be raffled off in a reverse raffle on Sunday October 18, 2009. Only 4900 tickets will be sold, 100 finalists will be selected and will participate in the reverse raffle for the home giveaway.

Acutal image of the house

Make your dreams come true, win a house in City View and at the same time help someone with a demyelinating disease. Funds raised will be used to fund future research of The Myelin Project.

Raffle tickets are only $50.00! Purchase yours online today!

1-Jul-09 9:38 AM

[firstname] [lastname], The Myelin Project Newsletter 19-May-09

noemail@myelin.org — Tue, 19 May 2009 15:56:40 GMT

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Hello [firstname],

Welcome to the The Myelin Project newsletter of upcoming events, articles, jobs and more from our membership.

Calendar Events
Articles
Releases

Calendar Events for 19-May-09 to 1-Jul-09

6th Annual Got the Nerve Triathlon
Speaker's Name:
Day: Saturday 23-May-09 8:00 AM
Location: Mt. Gretna Mt. Gretna, PA 17064
Summary: 6TH ANNUAL GOT THE NERVE TRIATHLON Saturday May 23, 2009...
Add to Calendar
Posted by: Candace Root

Lorenzo Odone Memorial
Speaker's Name:
Day: Saturday 30-May-09 9:00 AM
Location:
Summary: May 30, 2009 will be the one year anniversary of Lorenzo Odone's death. Please join us and Augusto in remembering Lorenzo in a moment of silence to honor the memory of Lorenzo and his brave fight with ALD. ...
Add to Calendar
Posted by: Candace Root

Articles for 5-May-09 to 19-May-09

Treating The Other Face of X-ALD -- Adrenomyelineuropahty

Author: Margaret Weis

Release Date: Tuesday 19-May-09 10:30 AM

Treating the Other Face of X-ALD - Adrenomyeloneuropathy 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 Oliver’s 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... [More Info]
Posted by: Candace Root

Releases for 19-Apr-09 to 19-May-09

NORTHWOOD SCHOOL STUDENTS RAISE MONEY FOR MYELIN DISEASE RESEARCH

Author: Candace Root

Release Date: Thursday 14-May-09 10:00 AM

The Myelin Project Each year the student body raises money for The Myelin Project which was established in 1989 with the aim of... [More Info]
Posted by: Candace Root

MS NEWS - Ex-Salesman Uses Net to Inform, Persuade

Author: Stuart Schlossman

Release Date: Thursday 7-May-09 11:00 AM

You may read the article in its entirety here ... [More Info]
Posted by: Candace Root

Stay up to date with our RSS feeds.

19-May-09 10:56 AM

Treating The Other Face of X-ALD -- Adrenomyeloneuropathy

noemail@myelin.org — Tue, 19 May 2009 15:30:00 GMT

Treating the Other Face of X-ALD - Adrenomyeloneuropathy

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 Oliver’s 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 progress has been made in treating X-ALD. The day is near when the final work on a newborn screening test will be complete. The test will enable doctors to identify all boys who carry the X-ALD gene. Treating pre-symptomatic boys with Lorenzo’s Oil significantly reduces the chances that X-ALD will develop. For those boys who develop symptoms despite Lorenzo’s Oil therapy, there remains the option of a bone marrow or cord blood transplant. While still risky, the success rates of bone marrow transplantation have improved significantly in recent years.

Many visitors to this website have not even heard of AMN. This disorder affects the other two-thirds of the males and about one-half of the females who carry the X-ALD gene. AMN is part of the complex of diseases caused by mutations in the ALD gene. In an affected family in which two boys have the same mutation, one may develop ALD and die early, while the other may remain asymptomatic until his 20’s when he develops AMN. X-ALD and AMN have quite different symptoms. AMN is characterized by loss of spinal cord and peripheral nerve function resulting in stiffness, ataxia, weakness to paralysis and sometimes cognitive defects showing that in some men with AMN, the brain is also involved.

In men, symptoms of AMN most often develop between 20 and 30 years of age, when they are just beginning to build a career and start a family. Women become symptomatic later in life, in their 40’s or 50’s, and while the symptoms are usually less severe than men with AMN, they can be serious and debilitating.

If you would like to make a contribution to the Augusto Odone New Investigator Award for AMN Research you may donate online http://www.myelin.org

19-May-09 10:30 AM

The Myelin Project Needs Your Support!

noemail@myelin.org — Thu, 16 Apr 2009 16:00:00 GMT

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The Myelin Project needs your support in continuing our mission to end human suffering by those inflicted with demyelinating diseases.

You can show your support by donating to the causes below.

Support research for Leukodystrophies and acquired diseases such as multiple sclerosis Donate online through Facebook. Learn more.

Mission: To raise money to fund accelerated research for myelin disease.

Support Development of a Newborn Screening Test for the Adrenoleukodystrophy (ALD) gene Donate online through Facebook. Learn more.

Mission: To detect ALD gene in newborns so life saving interventions such as Lorenzo’s Oil therapy can be started before clinical symptoms occur.

The Myelin Project is now on Facebook. Become a Fan and stay up to date with the latest Myelin Project news and research updates.

16-Apr-09 11:00 AM

2008 Myelin Project Newsletter

noemail@myelin.org — Mon, 29 Dec 2008 18:00:00 GMT

/attachments/wysiwyg/1/2008Newsletter.pdf

29-Dec-08 12:00 PM

How Schwann Cells Might Be Altered So That They Might Be Better Candidates For Myelin Transplantation

Wed, 10 Dec 2008 20:00:00 GMT

Dr. Anne Baron-Evercooren, Centre Hospitalier Universitaire, Pitié-Salpêtrière, Paris, presented her investigation of how Schwann cells might be altered so that they might be better candidates for myelin transplantation. By forcing the cells to express an enzyme, sialyltransferase, their ability to migrate was greatly improved.

Schwann cells (SC) form myelin in the peripheral nerves and are easy to get. Despite their obvious repair potential in the central nervous system (CNS), several studies indicated that SC aren’t effective in repairing CNS myelin. Other cell types (olfactory ensheathing cells, neural stem cells and oligodendrocytes) can repair CNS myelin, but are not very easy to get. Dr. Baron-Van Evercooren’s laboratory has explored some of the differences between SC and these other cell types. All of the myelin forming cells, including the SC, express NCAM, a specific protein, on their surface. However, the NCAM of the CNS myelin forming cells is “decorated” with a specific carbohydrate, while the NCAM of the SCs is “plain”.

To solve this problem, Dr. Baron-Evercooren and her associates have developed a method of getting SCs to produce “decorated” NCAM. After characterizing the modified SC cells in culture, they were transplanted to mice that had spinal cord demyelination. The modified SC were much more efficient at repairing the demyelination than the control SC. These results underline the potential therapeutic benefit of genetically modifying SC to overcome their poor migratory property and promote their repair potential in demyelinating disorders of the CNS. Dr. Baron-Evercoorn’s work has been supported by WFL and INSERM

10-Dec-08 2:00 PM

Identifying Cell Types That Might Be Useful In Re-myelination

Wed, 10 Dec 2008 20:00:00 GMT

Violetta Zujovic, Ph.D., Centre Hospitalier Universitaire, Pitié-Salpêtrière, Paris, reported on her work to identify cell types that might be useful in re-myelination.

During development, the entire nervous system begins as a mass of cells called the neural crest. Boundary cap cells (BC) are descended from neural crest cells. The BCs migrate to the boundary between the central (brain and spinal cord) and peripheral (sensory and motor nerves) divisions of the nervous system. BCs are important because they are the ancestors of Schwann cells (the myelin forming cells of the peripheral nerves). In addition, BCs are also the ancestors of some of the nocioceptive (pain-sensing) nerve cells of the dorsal root ganglia (part of the spinal cord).

To gain insights in BC’s behaviour in the demyelinated central nervous system, BCs were isolated from developing mouse brain. When BCs were transplanted to a demyelinated region of a mouse spinal cord, they were able to multiply, thus efficiently repairing the lesion. When grafted at a distance (one vertebra away) from the lesion, the BCs were not only able to multiply, but they and their descendents migrated toward the lesion. The migrating cells colonized and repaired the demyelinated lesion. Interestingly, the BCs were even more efficient at colonizing the demyelinated region than Schwann cells transplanted directly to the lesion.

Thus, there is evidence that boundary cap cells are able to remyelinate central nervous system axons. This evidence strongly indicates that boundary cap cells are of interest as a potential method of central nervous system myelin repair.

10-Dec-08 2:00 PM

Advances In Hematopoietic Stem Cell Based Gene Therapy For The Treatment of Metachromatic Leukodystrophy

Wed, 10 Dec 2008 20:00:00 GMT

Dr. Alessandra Biffi, of the San Raffaele Scientific Institute, Milan, Italy, reported on her group’s advances in hematopoietic stem cell based gene therapy for the treatment of metachromatic leukodystrophy.

Metachromatic Leukodystrophy (MLD) is a demyelinating disease due to inherited deficiency of arylsulfatase A (ARSA). In the absence of effective therapies, MLD is a disease with an urgent medical need. This is particularly important, since donor hematopoetic stem cell (HSC) transplant in MLD has met with mixed results. In a mouse model, ARSA can be transplanted to the central nervous system. Specifically, the ARSA gene was transplanted to HSC of MLD mice. Then the modified HSCs were transplanted back to the MLD mice. After this treatment, the manifestations of MLD were corrected. Bboth the feasibility and safety of this therapeutic strategy were tested in a pre-clinical model. Using HSCs from human MLD patients, a similar strategy has successfully corrected the ARSA deficiency. These data have provided the basis for the next step, giving the treated HSCs back to an MLD patient. This clinical trial of HSC gene therapy for the treatment of MLD patients is expected to start by the second quarter of 2009. As in the mouse model, the protocol is based on isolating HSCs from the MLD patients, transplanting the normal ARSA gene into the HSCs, then giving the cells back to the patient. This strategy is expected to avoid the potential complications of graft vs. host disease and to achieve sustained long term ARSA expression in MLD patients.

10-Dec-08 2:00 PM

Long-term Outcome of Bone Marrow Transplantation in a Mouse Model of Krabbe’s Disease

Wed, 10 Dec 2008 20:00:00 GMT

Dr. Yoichi Kondo, University of Wisconsin, discussed the long-term outcome of bone marrow transplantation in a mouse model of Krabbe’s disease

Bone marrow transplantation (BMT) or umbilical cord blood transplantation are the only therapies available to date for globoid cell Leukodystrophy (GLD, Krabbe disease). However, they do not cure the disease. To discover why, Dr. Kondo investigated twitcher (twi) mice, a model of GLD. If BMT was performed on these mice 10 days after birth, the twi mice lived for an average of 168 days. Those animals that did not receive BMT lived for only about 51 days. When compared to control twi mice, animals that received BMT had better myelin formation at 45 days of age. However, at 200 days, the mice receiving BMT had extensive loss of myelin and displayed evidence of progressive neuronal damage. This study demonstrates that enzyme replacement by simple BMT is not sufficient for the long-term treatment of GLD.

10-Dec-08 2:00 PM

Novel Strategy for Gene Therapy of Globoid Cell Leukodystrophy.

noemail@myelin.org — Wed, 10 Dec 2008 20:00:00 GMT

Dr. Alessandra Biffi also reported on a novel strategy for gene therapy of globoid cell leukodystrophy.

Globoid leukodystrophy (GLD), also known as Krabbe Disease, is a genetic disease whose victims are unable to make galactocerebrosidase (GALC). The GALC enzyme helps to metabolize some of the lipid components of myelin. A gene therapy strategy for GLD based on hematopoietic stem cells (HSC) is under development. The gene transfer can be made by using a virus, called the lentivirus (LV). This has proved to be an efficient method to transfer the GALC gene to HSCs The treated cells are able to express GALC at levels that are very high. However, this high level of GALC expression may also cause functional impairment, or even death, of the HSCs. It could be that the unnaturally high levels of GALC expressed by the treated HSCs are damaging to them. However, GALC doesn’t damage the descendents of HSCs. This suggests a new therapeutic strategy that is now being tested. The LV vector has been modified, so that when the GALC gene is transplanted to the HSCs, the GALC gene lies dormant until the HCS divides and differentiates. That is, the GALC gene is not expressed until it is safe to do so. This novel strategy avoids GALC damage in HSCs, while allowing sustained GALC expression in the progeny of the HSCs. Evaluation of this strategy is in progress.

10-Dec-08 2:00 PM

Genetic Alliance Issues Statement Applauding New NIH Therapeutics for Rare and Neglected Diseases Program

noemail@myelin.org — Thu, 21 May 2009 19:00:00 GMT

WASHINGTON – May 20, 2009 – Earlier today, the National Institutes of Health (NIH) announced the establishment of a new initiative called the Therapeutics for Rare and Neglected Diseases (TRND) Program, a federally mandated effort to encourage and speed the development of new drugs for rare and neglected diseases. Sharon Terry, president and chief executive officer of Genetic Alliance, a nonprofit health advocacy organization, issued the following comments in response to the establishment of TRND: Today marks a leap forward in transforming the rare and neglected disease drug development pipeline. NIH is a crucial entity working in this space. In the United States, a rare disease is defined as a condition affecting fewer than 200,000 people, and diseases lacking substantial therapeutic development activity are considered neglected diseases. Many genetic diseases are both rare and neglected, and collectively there are more than 6,000 rare and neglected diseases affecting over 25...

NORTHWOOD SCHOOL STUDENTS RAISE MONEY FOR MYELIN DISEASE RESEARCH

noemail@myelin.org — Thu, 14 May 2009 15:00:00 GMT

The Myelin Project Each year the student body raises money for The Myelin Project which was established in 1989 with the aim of funding research to find a cure for demyelinating diseases, such as the leukodystrophies which are genetic and multiple sclerosis which is acquired. In 1997, when Tommy Fleming, son of Tom and school nurse Karen, was diagnosed with MS, the most common Myelin disorder, the school planned to have an annual fundraiser. This year, the rains thwarted many of our planned fundraising activities, but the students were not to be daunted by the weather! After a successful dance held the night before, the enthusiasm continued the next morning as a hearty group of about 45 students walked around the lake in unison, splashing in puddles and wearing their handmade tie-dyed Myelin t-shirts in support of this cause. The bake sale was moved inside, and many day student families, faculty and students brought in their sweet donations to raise funds. The...

MS NEWS - Ex-Salesman Uses Net to Inform, Persuade

noemail@myelin.org — Thu, 07 May 2009 16:00:00 GMT

You may read the article in its entirety here

http://www.nationalmssociety.org/online-community/personal-stories/stuart-schlossman/index.aspx

Augusto Odone New Investigator Award for AMN research

noemail@myelin.org — Thu, 16 Apr 2009 20:00:00 GMT

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 progress has been made in...

Hope for the Future: Embryonic Stem Cells

noemail@myelin.org — Tue, 31 Mar 2009 23:00:00 GMT

The American Brain Coalition (ABC) is a non-profit organization that brings together people with disabling brain disorders, the families of those that are affected, and the professionals that research and treat diseases of the brain. The mission of the ABC is to reduce the burden of brain disorders, and advance the understanding of the brain. Stem Cell Research Hope for the Future: Embryonic Stem Cells ABC along with over 70 percent of the American public, supports federal funding for embryonic stem cell research. This research holds much promise in better understanding brain disorders and for developing new treatments and possibly cures for people with brain disorders. Embryonic stem cells hold immense promise for those suffering from neurological diseases, such as Parkinson’s, and spinal cord injury. These diseases, and many others, are caused by damage to a patient’s cells and tissue. Stem cells can genetically mirror the healthy cells of a living person. In other words,...

Developing Treatments for Adrenomyeloneuropathy and Multiple Sclerosis

noemail@myelin.org — Fri, 27 Mar 2009 20:00:00 GMT

Financial News Nutra Pharma Corp. (NPHC.OB) Subsidiary Introduces Cost Effective Contract Research Services Scottsdale, Arizona 3/27/2009 06:17 PM GMT (TransWorldNews) QualityStocks would like to highlight Nutra Pharma Corp. (OTCBB: NPHC). Nutra Pharma is a biopharmaceutical company specializing in the acquisition, licensing and commercialization of pharmaceutical products and technologies for the management of neurological disorders, cancer, autoimmune and infectious diseases. The company, through its subsidiaries, carries out basic drug discovery research and clinical development and also seeks strategic licensing partnerships to reduce the risks associated with the drug development process. In the company’s news yesterday, Nutra Pharma Corp., a biotechnology company focused on developing treatments for Adrenomyeloneuropathy (AMN), HIV and Multiple Sclerosis (MS), announced that its wholly-owned drug discovery subsidiary, ReceptoPharm, has introduced a line of...

New Research Award for AMN

noemail@myelin.org — Wed, 18 Mar 2009 13:00:00 GMT

The Myelin Project announces the creation of the Augusto Odone Young Investigator Award. This Award is created to encourage promising young investigators to pursue a career in remyelination research. This Research Award will be co-funded by Oliver's Army and The Myelin Project.

This first Award is aimed at research of adrenomyeloneuropathy (AMN).

Adrenomyeloneuropathy (AMN) is a rare inherited metabolic disorder that is a form of Adrenoleukodystrophy (ALD), which occurs in young men. AMN and ALD are two distinct diseases arising from a mutation in the same gene (the ALD gene). Approximately 1/3 of the boys who carry the ALD gene will (if not treated with Lorenzo's oil) develop ALD and die within 1 to 5 years. The remaining 2/3 will develop AMD as young adults. About 1/2 to 2/3 of the mothers will develop AMN in middle age. So, while ALD has received a lot of publicity and been the subject of much rsearch, AMN research has been largely overlooked.

Maximum research award will be $150,000 per year for 2 years. An additional year will be possible with demonstration of satisfactory progress.

Preference will be given to projects that are translational/clinical in nature.

Details for submission will be available on April 1, 2009 on our web site

MYELIN PROJECT OF CANADA: UNA SERATA CONTRO LA SCLEROSI MULTIPLA

noemail@myelin.org — Thu, 12 Mar 2009 23:15:00 GMT

Marilena Carinci, insieme ad un gruppo di amiche e con la fattiva collaborazione dell'ufficio del Consigliere Regionale di Vaughan Gino Rosati, ha organizzato una serata a favore della ricerca sulla Sclerosi Multipla.
Ospite della serata è stato Augusto Odone ed è stato proiettata una clip del film "L'olio di Lorenzo", basato sulla storia vera della ricerca disperata di una medicina per Lorenza deceduto lo scorso anno all'età di 30 anni.
Laura Pauline Mammone, vincitrice del Vaughan Fame Award, si è esibita nel corso della serata con un vasto repertorio canoro.

Massimiliano Galassi

Myelin Board Member Chris Kaag Receives Alumni Achievement Award

noemail@myelin.org — Tue, 17 Feb 2009 22:00:00 GMT

It gives me great pleasure to share with you today the exciting news that Penn State Berks alumnus Christopher Kaag ' 04 has been chosen by University Park as one of ten alumni to receive the 2009 Alumni Achievement Award. The Alumni Achievement Award recognizes alumni 35 years of age and younger for their extraordinary professional accomplishments. Recipients of the award are invited to return to the campus to share their expertise with students, faculty and administrators. They are to demonstrate to students that Penn State alumni succeed in exceptional fashion at an early age. Chris was diagnosed at the age of 21 with a degenerative nerve disorder. Since then he has maintained a positive attitude and stays focused on his goals. He has combined his passion for entrepreneurialship, fitness and charity into a successful business, charitable organization and annual triathlon. In 2004, Chris founded, Got the Nerve?, a triathlon designed to raise money for the Meylin...

Aldagen Receives Orphan Drug Designation for ALD-101

noemail@myelin.org — Thu, 15 Jan 2009 16:00:00 GMT

Aldagen Receives Orphan Drug Designation for ALD-101 ALD-101, a Novel Stem Cell Therapy, Is Currently in Phase 3 Trial DURHAM, NC -- (Marketwire) -- 10/30/08 -- Aldagen, Inc. today announced that it hasreceived orphan drug designation for ALD-101 from the U.S. Food and DrugAdministration (FDA). The designation was granted for the use of ALD-101to improve patient outcomes by decreasing time to platelet and neutrophilengraftment in patients with inherited metabolic disorders undergoingumbilical cord blood transplantation. Aldagen is currently conducting a Phase 3 trial infusing ALD-101 inpatients with inherited metabolic disorders undergoing umbilical cord bloodtransplantation. Cord blood transplantation is commonly used to treatchildren with inherited metabolic diseases, including Krabbe syndrome,metachromatic leukodystrophy, Hurler syndrome and adrenoleukodystrophy.These diseases are progressive, degenerative and often fatal. In manycases, the only treatment available to these...

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 17:44:27 GMT

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.

Demyelinating Diseases In Brief

Tue, 26 May 2009 18:58:19 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...

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...

Lorem ipsum survey

noemail@myelin.org — Thu, 09 Aug 2007 20:40:38 GMT

Objectives:

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Duis autem dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit au gue duis dolore te feugat nulla facilisi.

Ut wisi enim ad minim veniam, quis nostrud exerci taion ullamcorper suscipit lobortis nisl ut aliquip ex en commodo consequat. Duis te feugifacilisi per suscipit lobortis nisl ut aliquip ex en commodo consequat.Lorem ipsum dolor sit amet, consectetuer adipiscing elit, sed diem nonummy nibh euismod tincidunt ut lacreet dolore magna aliguam erat volutpat.

Ut wisis enim ad minim veniam, quis nostrud exerci

Release Date: 9-Aug-07 3:40 PM
Expiration Date: 9-Nov-07 3:40 PM

Ut wisis enim ad minim veniam, quis nostrud exerci

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Sat, 04 Jul 2009 20:19:59 GMT