Patient Advocates With Multiple Sclerosis Fund Clinical Trial Of Promising Drug That Has Already Helped Thousands

Main Category: Multiple Sclerosis
Also Included In: Clinical Trials / Drug Trials
Article Date: 13 Feb 2007 - 14:00 PDT

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Over the last decade, anecdotal reports suggested that a very low dose of an FDA-approved drug called naltrexone provides effective symptom relief for many patients who suffer from Multiple Sclerosis. Frustrated by the lack of scientific research, volunteers began raising money to fund a human clinical trial of Low Dose Naltrexone (LDN) for MS. This effort culminated in awarding a $25,000 gift to the University of California, San Francisco Multiple Sclerosis Research Center.

Naltrexone was approved by the FDA 20 years ago for treating addiction, but researchers at Penn State University discovered its ability to normalize a dysfunctional immune system when used in very low doses. Dr Bernard Bihari, a Harvard trained neurologist in New York City, observed positive results in his patients using LDN for MS and other immune system disorders. His observations were published at http://www.ldninfo.org, which is where an MS patient named SammyJo Wilkinson learned of it.

Wilkinson was diagnosed with MS in 1995 at age 30. For years she used the injectable drugs approved by the FDA for MS but to no avail; the disease progressed to walking with a cane, and she had to give up her technology career. By the end of 2003, she was falling so often that a motorized wheelchair was on order.

"In February of 2004 I took my first 4.5 mg capsule" recalls Wilkinson, "and I have recovered without setbacks ever since." In 2005 she attended the 1st LDN Conference, and in conjunction with other patient advocates including the nonprofit Accelerated Cure Project for MS, formed a committee to raise funds to stimulate research for LDN treatment of MS. Because naltrexone is an inexpensive generic drug, the concern was that there would be little commercial interest in research, so they felt it was up to patients themselves to lead the way. In addition to Wilkinson, this committee also consisted of Robert Lester and Art Mellor.

They set up a website, http://www.LDNers.org, and received enthusiastic support from other patients who had benefited from LDN. The culmination of the fundraising effort was a gala benefit in California attended by over 250. The organizer, Vicky Finlayson, had experienced an amazing recovery from 10 years of painful MS attacks after taking LDN, and felt passionately about funding the research, so that others with MS could gain the relief she had.

Following the benefit, $25,000 had been raised, and word arrived that the UCSF Multiple Sclerosis Center was interested in conducting the first human trial in the US, to measure the impact of LDN on MS. The funds were donated to UCSF, and a 3 month double-blind crossover trial involving 80 patients is expected to start this Spring.

About UCSF MS Center

The Multiple Sclerosis Center at the University of California serves the MS community of Northern California through a commitment to providing the highest standard of integrated patient care, innovative basic science and clinical research, and education. The UCSF MS center cares for approximately 3,500 patients who suffer from MS and provides consultation for many more patients who geographically are unable to receive continuity of care in San Francisco. The MS Center is committed to developing improved therapies for MS through clinical trials as well as basic science research oriented at understanding why patients develop MS and uncovering novel therapeutic strategies. For more information about the UCSF MS Center please visit the website: http://www.ucsf.edu/msc/index.html

About Accelerated Cure Project for MS

Accelerated Cure Project for Multiple Sclerosis, www.acceleratedcure.org, is a national nonprofit organization dedicated to curing Multiple Sclerosis (MS) by determining its causes. Accelerated Cure Project believes this effort can be accelerated by organizing the research process and encouraging collaboration between research organizations and clinicians. A "Cure Map" is currently being developed by Accelerated Cure Project to establish what is known and what is not known about the causes of MS. From the Cure Map, Accelerated Cure Project will facilitate research most likely to reveal the causes of MS in the shortest time through a large-scale, multidisciplinary, MS Repository. For more information about Accelerated Cure Project or to make a corporate or individual donation, call 781/487-0008, visit http://acceleratedcure.org, or send an email to info-pr@acceleratedcure.org.

About Multiple Sclerosis

Multiple Sclerosis is a chronic demyelinating disorder of the central nervous system that often results in severe disability including the inability to walk, blindness, cognitive dysfunction, extreme fatigue and other serious symptoms. MS affects over 400,000 people in the US and 2 million individuals worldwide. The disorder occurs twice as often in women as in men. The cause is not known and there is no known cure.

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