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In middle of MS battle, pioneering foundation closing its doors

Multiple sclerosis patient Scott Johnson started the Myelin Repair Foundation in 2003

The Myelin Repair Foundation, founded by a multiple sclerosis patient to speed new approaches for battling the debilitating disease, will close Aug. 31 due to financial problems, the nonprofit said in a message on its website Monday.

The decision by the Saratoga foundation comes at a time when drug developers are increasingly leaning on nonprofits to help them fund trials, find potential disease targets and attract patients to clinical trials.

But the MRF, with an average annual budget of about $5 million, went beyond the old formula of partnering with industry players. It developed new ways to help researchers zero in on the degradation of myelin, licensing one mouse model in 2013 to biotech giant Biogen Inc. (NASDAQ: BIIB). It funded academic research, but it also set up its own labs in Sunnyvale to accelerate discoveries.

The foundation's crowning achievement perhaps came in April, when it handed off development of a long-forgotten high blood pressure drug to the National Institutes of Health as a way to stop — and possibly repair — the damage caused by MS to the fatty myelin sheaths that typically protect nerve cells.

"Ironically even with tremendous success on the research side, we have struggled with raising enough money to keep up with our extraordinary low research costs," President Scott Johnson wrote in a letter to supporters.

MS is a progressively debilitating disease in which the immune system runs amok and attacks myelin. Symptoms include fatigue, numbness, uncontrollable muscle twitches, dizziness and vision problems. MS can disappear for days or years before flareups occur in the roughly 400,000 Americans with the disease.

Johnson founded the organization in 2003, relying on donations from individuals and foundations from 29 countries to raise $55 million over MRF's life. But, Johnson noted, the National Multiple Sclerosis Society last year alone raised $250 million.

A mere 56 donors provided 92 percent of the MRF's revenue. Johnson said, "several large donations" that MRF had counted on for the fiscal year that begins July 1 haven't come through.

"Having to stop our efforts and close our doors is the worst case for all who devoted time and/or financial support to our endeavor to help all those impacted by MS," Johnson wrote. "Our consolation is that over the last 11 years we have had a dramatic impact on the myelin repair landscape."

Indeed, until a decade ago, most MS research focused on controlling inflammation caused by the immune system. MRF, instead, zeroed in on ways to stop the erosion of myelin and potentially restoring myelin in MS patients. The foundation's big push was to get a myelin-repair drug into clinical trials within a dozen years, and Johnson said he now believes that a neuroprotective or repair therapy will be available within 10 years.

One of the potential MS treatments with an MRF legacy could be guanabenz, or MRF-008. The drug was found by the University of Chicago's Dr. Brian Popko, who has received MRF funding, to play an important role in the survival of oligodendrocytes in the presence of inflammation.

Working with the NIH, the Food and Drug Administration and other members of an MRF research consortium, the foundation helped to fund preclinical work on guanabenz. It found a manufacturer of the out-of-circulation drug and lined up a clinical trial protocol that could be used on a new generation of experimental MS drugs.

Guanabenz began an NIH-overseen trial in April, and the long battle to bring the drug into a trial was documented in a recent San Francisco Business Times story.

"What we have accomplished," Johnson said, "will live on through the people we have worked with and the discoveries we have made."

Story Source: The above story is based on materials provided by BIZJOURNALS
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