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The Family, the Film, and the Oil

Wed, 08 Feb 2012 00:24:14 GMT

- The Family - Augusto Daniel Odone (Rome, May 4, 1933) and Michaela Teresa Murphy Odone (January 10, 1939 - June 10, 2000) are the parents of Lorenzo Odone (May 29, 1978 - May 30, 2008), a child afflicted with the illness adrenoleukodystrophy (ALD). They became famous for discovering a treatment using Lorenzo's oil, for their son's incurable illness, and this quest was recounted in the film Lorenzo's Oil (1992).[1] One of Augusto's other children is the journalist Cristina Odone. In recognition of the parents' work, Augusto Odone has received an honorary doctorate from the University of Stirling. He continues to raise funds and drive the scientific task force known as The Myelin Project. Michaela Odone battled cancer for some time, and finally died of lung cancer at 61.[2] Lorenzo died the day after his 30th birthday. He was almost totally paralyzed but was, according to his father Augusto, holding his own. He couldn't see, speak,...

Tue, 07 Feb 2012 01:33:29 GMT

Il Progetto Mielina Il Progetto La mielina è una multinazionale di ricerca medica senza scopo di lucrovolto a finanziare la ricerca per trovare una cura per malattie demielinizzanti. Fondatanel 1989 da Augusto e Michaela Odone per il loro figlio, Lorenzo, che soffriva di X-linked adrenoleucodistrofia (X-ALD), la più comune delle leucodistrofie, la storiadella lotta dei Odones dei è stato drammatizzato nel film L'olio di Lorenzo ,interpretato da Nick Nolte e Susan Sarandon, pubblicato dalla Universal Studios nel 1992. Un incontro multinazionale delle famiglie si unì ai Odones nei loro sforzi. Colpito da uno o l'altra delle malattie demielinizzanti, si sono rifiutati di essere vittime passiveincoraggiando la cooperazione tra i ricercatori, e fornendo agli scienziatifinanziamenti per la ricerca traslazionale e clinica. Mentre Il Progetto Mielina ha preso le misure convenzionali per far progredire la ricerca...

Take Action!

Thu, 02 Feb 2012 00:11:25 GMT

DONATE to the CAUSE: The most effective way to make an immediate impact is to fund myelin research by making a charitable contribution directly to our organization of any amount you can afford. All donations are fully tax-deductible. Just click the button below: VOLUNTEER and help us FUNDRAISE: You can make a difference by hosting your own fundraiser in your community, e.g. a bake sale, walk or run-a-thon, fundraiser dinner, etc. in honor of the Myelin Project. We can provide you with whatever you may need to make it happen. Simply email info@myelin.org with your fundraising ideas. SPREAD the WORD: One of our goals is to raise awareness of demyelinating diseases which affect more than 2 million people worldwide.. Like us on Facebook and keep the conversation going. Tell your friends and family about us and what we do. Have them visit us online for more...

A Letter from the President

Tue, 31 Jan 2012 23:16:56 GMT

May 15, 2010 Dear Friends and Family of the Leukodystrophy Community, 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 scientists devoted to our Mission. My journey with these illnesses began when I lost my little brother to adrenoleukodystrophy in 1960, and my other younger brother to adrenomyeloneuropathy (AMN) in 2001. I have three sons, Michael, Christopher, and Gregory, my eldest Michael unfortunately inherited the genetic defect. He is now 31 years old and currently...

January News

Tue, 31 Jan 2012 18:35:44 GMT

Myelin News January 27th, 2012 Family of ALD sufferers pledge to raise money for The Myelin Project 11:30am Friday 27th January 2012 By Andy Martin Two brothers are following in their father's footsteps and becoming trustees of a global charity. Charles and Harry Fynn of Bournemouth have pledged to throw themselves into fundraising for The Myelin Project and to help raise awareness of its work. It is a cause close to their heart for a very good reason as both young men carry the rogue gene for ALD (adrenoleukodystrophy). It has been described as a cerebral timebomb which was once considered fatal. That was until the parents of an American sufferer, Lorenzo Odone, refused to accept the prognosis that there was no hope for their son. The outcome of their search for a cure was a special therapy that became known as Lorenzo's Oil. READ MORE... January 23rd, 2012...

Ways to Donate

Wed, 25 Jan 2012 02:19:43 GMT

We appreciate your consideration of donating to our organization. The Myelin Project is a 501(c)(3) non-profit organization, tax ID# 52-1545992; all donations are tax-deductible to the full extent of the law. We sincerely thank you for your contribution. The Myelin Project has partnered with Network for Good to securely process your online credit card donation via the Network for Good Donor Advised Fund. This transaction will appear on your credit card statement as Network for Good.All online donations are made through a secure server hosted by the Network for Good, a BBB Accredited CharityFor more information on the Network For Good, please click the NFG link. SSL certificates from GeoTrust are the ultimate online security and trust solution delivering both 256-bit encryption and the True Site™trust mark providing third-party website identity validation. By Mail: The...

SCIENTIFIC ADVISORY PANEL

Sat, 21 Jan 2012 01:31:41 GMT

Ian Duncan, BVMS, FRSE, PhD Chair of The Myelin Project 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 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 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: anne.baron@upmc.fr Robin J.M. Franklin, BVetMed, BSc, PhD Professorof Neuroscience, MRC Cambridge Centre for Stem Cell Biology and...

Videos

Fri, 20 Jan 2012 02:29:06 GMT

Luigi Naldini, San Rafaele Telethon Institute for Gene Therapy, and Member of The Myelin Project Scientific Advisory Board.

The 14th Annual Hammerfest Triathlon

Lorenzo's Legacy

Public Service Announcement - The Giving Back Series

Research Progress Reports

Tue, 10 Jan 2012 20:33:14 GMT

2011 News from the Laboratory Gianvito Martino Martino's lab has contributed to the field of stem cell biology by demonstrating that adult neural stem/precursor cells (NPCs) posses a constitutive and inducible 'immunotrophic' signature which makes these cells - once in vivo transplanted - capable to protect the central nervous system (CNS) from inflammatory and degenerative insults. The concept of therapeutic plasticity emerged as the capacity of in vivo transplanted NPCs to act as therapeutic weapons not only by replacing damaged cells but also by promoting neuroprotection via the release of immunomodulatory and neurotrophic molecules. Gianvito Martino, MD Institute of Experimental Neurology Division of Neuroscience DIBIT - II San Raffaele Scientific Institute Milan Annik Baron Our team investigates the cellular and molecular mechanisms of...

December News

Fri, 06 Jan 2012 00:03:33 GMT

Myelin News December 26th, 2011 New Drugs Raise Hope for Patients with MS By LAURIE TARKAN Published: December 26, 2011 Three years ago, Kristie Salerno Kent, a singer-songwriter, was standing in a security line at the airport on her way home from a gig when her legs went numb. From the waist down, it felt as though I was trying to walk through a bowl of oatmeal, said the 38-year-old musician, who has multiple sclerosis. Read more... December 23rd, 2011 Doctor Reverses MS in 9 Months by Eating These Foods Through her research into MS, Dr. Wahls discovered that, for some unknown reason, in addition to the commonly known symptoms, MS patients' brains also tend to shrink. This roused her curiosity, and led her to research other diseases that have similar brain shrinkage, namely Huntington's, Parkinson's...

2011 News from the Laboratory

Thu, 05 Jan 2012 23:39:17 GMT

Gianvito Martino Martino's lab has contributed to the field of stem cell biology by demonstrating that adult neural stem/precursor cells (NPCs) posses a constitutive and inducible 'immunotrophic' signature which makes these cells - once in vivo transplanted - capable to protect the central nervous system (CNS) from inflammatory and degenerative insults. The concept of therapeutic plasticity emerged as the capacity of in vivo transplanted NPCs to act as therapeutic weapons not only by replacing damaged cells but also by promoting neuroprotection via the release of immunomodulatory and neurotrophic molecules. Annik Baron- Everkoren Our team investigates the cellular and molecular mechanisms of myelin repair in the central nervous system (CNS), with a strong emphasis on the role of stem cells from both the CNS and PNS in the remyelination of demyelinated lesions. Over the past years, we demonstrated a contribution of the endogenous adult neural...

The Myelin Project's 2011 Annual Conference

Thu, 22 Dec 2011 05:08:12 GMT

Since our initial founding in 1989, we have not, despite our valiant efforts, attained our definitive goal of remyelinating the human central nervous system. This does not mean, however, that we have not made progress. Far from it. We have created a model that closes the gap between the lay person and scientist. Although we have not reached our ultimate objective, we have developed all the prerequisites to reach this goal in the near future. These results are possible through collaboration with our Scientific Advisory Board, the U.S. Myelin Project, The British Trust for The Myelin Project, The Myelin Projekt Deutschland and Il Progetto Mielina. We hosted a very productive meeting in Paris on October 13-15, 2011. Those attending included Dr. Annik Baron-Van Evercorren (France), Dr. Wolfgang Bruck (Germany), Dr. Ian Duncan (USA), Dr. Robin Franklin (UK), Dr. Charles ffrench-Constant (UK), Dr. Jeff Kocsis (USA), Dr. Gianvito Martino (Italy), members of our...

MEDIA

Sat, 03 Dec 2011 00:46:03 GMT

Articles

Photos

Press Releases

Videos

MYELIN NEWS - November

Tue, 22 Nov 2011 20:29:10 GMT

Myelin News November 22nd, 2011 Leukodystrophies: The Book is Released! By: Gerald V. Raymond (Editor), Florian S. Eichler (Editor), Ali Fatemi (Editor), Sakkubai Naidu (Editor) The leukodystrophies are serious, progressive disorders of demyelination, manifesting themselves in infancy or early childhood and progressing rapidly, leading to loss of sight, hearing, speech, and ambulation, and early death. A comprehensive guide to the genetics and pathogenesis of these disorders, as well as their clinical features, diagnosis and therapy, is needed, particularly as their early identification can allow more effective treatment. Read more... November 21st, 2011 MSRCNY Recieves Approval For Groundbreaking Stem Cell Research Trial in Multiple Sclerosis November 18th, 2011 Functional genomic analysis unravels a metabolic-inflammatory interplay in ALD ...

RESEARCH PROJECTS

Wed, 16 Nov 2011 03:21:25 GMT

The following is list of research projects currently being funded by the Myelin Project: 1. Newborn Screening in X-linked Adrenoleukodystrophy and other peroxisomal disorders. Gerald Raymond, M.D., Kennedy Krieger Institute, Baltimore, MD 2. Introducing Stem Cell Based Myelin Repair Therapies in Patients with Multiple Sclerosis. Neil Scolding, University of Clinical Neurosciences, Department of Neurology, University of Bristol, UK 3. Roles of microgliamacrophages and their therapeutic use in combination with lentiviral gene transfer in Krabbe's Disease Ian Duncan - University of Wisconsin, Madison Wisconsin 4. Admistration of 2K 230211 (anti-progesterone) to reduce PLP Over-Expression in Mouse Model of Pelizaeus-Merzbacher Disease Klaus-Armin Nave - Max-Planck-Institute of Experimental...

Links and Associations

Fri, 11 Nov 2011 23:21:48 GMT

Links & Associations

Visit Adrenoleukodystrophy (ALD) Support

Myelin Project Staff and Board Members

Thu, 10 Nov 2011 19:50:46 GMT

Patti Chapman, President, Chairman of the Board P.O. Box 39, Pacific Palisades, CA 90272-2041 1-800-8-MYELIN F: 310-230-4298 patti.chapman @ myelin.org Greg Benton, Vice-President 340 Argeullo Blvd., Apt. 107 | San Francisco, CA 94118 1-800-8-MYELIN F: 310-230-4298 greg.benton@myelin.org Debi Luther, Treasurer, Board Member Huntington Beach, CA debi.luther@myelin.org DIRECTORS Diane Suchomel, Board Member, Secretary President, Cure ALD Foundation Lincoln, CA 95648 diane@lincolnxing.org Mr. John Gernhart, Board Member Kingsley, IA johnsueg@frontiernet.net Mrs. Jean Kelley, Board Member Branford, CT jeanakelley@gmail.com Myelin Project Board Member Opening ...

The Leukodystrophy Alliance

Thu, 10 Nov 2011 02:10:00 GMT

The Leukodystrophy Alliance: The Luekodystrophy Alliance Home Page : http://leukodystrophyalliance.org/ The Leukodystrophy Alliance exists to leverage the collective and individual strengths, resources, and energies of participating organizations in a highly collaborative manner to improve the quality of life of those living with leukodystrophies, while accelerating the search for, and development of, viable therapies. Links to particiapting organizations' websites: BETHANY'S HOPE FOUNDATION | HUNTER'S HOPE FOUNDATION |MLD FOUNDATION | M.O.R.G.A.N. PROJECT | MYELIN PROJECT | PMD FOUNDATION | STOP ALD FOUNDATION | UNITED LEUKODYSTROPHY FOUNDATION

The ALD-AMN Global Alliance

Thu, 10 Nov 2011 02:07:28 GMT

The ALD-AMN Global Alliance: The ALD-AMN Global Alliance Home page: http://www.ald-amnglobalalliance.org/home.html The ALD-AMN Global Alliance was created in July of 2011, uniting the international ALD and AMN community to find and support effective methods to prevent, diagnose, treat, and/or cure ALD and AMN. It aslo aims to provide excellent patient care services to families and friends worldwide. The mission of the ALD-AMN Global Alliance is to unite like minded charitable organizations from around the world with the common goal to spread awareness, raise money to advance research for treatments and a cure, expand the bone marrow registry, and provide support, direction, and information to affected persons and their families. Links to particiapting organizations' websites: ALD LIFE | AUSTRALIAN LEUKODYSTROPHY SUPPORT GROUP | BE A HERO BE A DONOR | FIGHT ALD | THE MYELIN PROJECT | STOP ALD FOUNDATION ...

Frequently Asked Questions - F.A.Q.'s

Mon, 07 Nov 2011 20:02:05 GMT

What is Myelin? Myelin is the insulating sheath surrounding nerve cells... The myelin is the white matter coating our nerves, enabling them to conduct impuxlses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids. Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons that make up nerve fibers. Each oligodendrocyte can myelinate several axons. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and acquired by diseases such as multiple sclerosis. What is Lorenzo's Oil? Lorenzo's Oil is a combination of a 4:1 mix of erucic acid and oleic acid, extracted from rapeseed oil and olive oil. It is used in the investigational treatment of...