For Immediate Release
For more information contact:
Feinstein Kean Healthcare
Patient Advocates With Multiple Sclerosis Fund Clinical Trial of Promising Drug Many Say Has Helped; University of California, San Francisco MS Center to Conduct Study of Low-Dose Naltrexone
WALTHAM, Mass., Feb. 19 -- 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 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 the advocates 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, 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 U.S., 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.
The study is planned by neurological researcher Bruce Cree, M.D. Further contributions can be made and information obtained by contacting the Clinical Studies Manager at UCSF, Dr. Elena Koryeyeva, 415-514-2467, http://www.ucsf.edu/msc/
. SammyJo Wilkinson can be contacted at 425-971-5884, http://www.LDNers.org
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
Accelerated Cure Project for MS (ACP) is a nonprofit organization whose mission is to accelerate efforts toward a cure for multiple sclerosis (MS) by rapidly advancing research that determines its causes and mechanisms. We provide biomedical researchers with resources that catalyze open scientific collaboration and enable them to explore their novel research ideas rapidly and cost-efficiently. ACP’s strategic initiatives include the Multiple Sclerosis Discovery Forum and the ACP Repository, a large-scale collection of highly-characterized biosamples available to scientists at any organization conducting research that contributes to our mission. All results generated through analysis of Repository samples and data are contributed back to the ACP Repository Database, resulting in an increasingly valuable and comprehensive information resource that can be analyzed to reveal new insights about MS. To date, ACP has enrolled almost 3,000 participants into the Repository through a network of 10 MS clinical centers across the United States. The samples provided by people with MS and related disorders have supported more than 60 research studies worldwide and generated more than 150 million returned data points.
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 more than 400,000 people in the US and two million individuals worldwide. The disorder occurs twice as often in women as in men. What causes MS is undetermined and no cure has yet been developed.