By Shelly Banjo
Lily Safra wants to chart the course of Parkinson's disease in order to stop it.
The widow of the banker Edmond J. Safra is giving $2.5 million to the New York-based Michael J. Fox Foundation to help fund a clinical study to help track the progression of Parkinson's disease.
Bringing together pharmaceutical companies, nonprofits, scientists and private funders, Ms. Safra's lead gift will help form a public-private partnership to fund the five-year $40 million Parkinson's Progression Markers Initiative, which will use neuro-imaging, testing of biologic samples and behavioral assessments of 600 participants to identify so-called biomarkers of Parkinson's disease.
Biomarkers provide the tools to track and measure the progression of a disease, which Parkinson's researchers say is crucial to finding a cure for the disease and determining whether a therapy or drug is working.
Unlike other diseases, such as a cancer where doctors can track the size and spread of a tumor to tell if a certain therapy is working, it's more difficult to measure the progression of Parkinson's, a degenerative neurological disorder that impairs motor skills, speech and other movement.
"We need treatments that slow or stop progression of the disease, but without developing these markers we're not going to get there," says Katie Hood, the foundation's CEO. "This is the biggest impediment to finding a cure."
Ms. Hood says most researchers are currently creating therapies that treat only the symptoms of the disease, such as tremors or ease of motion, rather than attacking the underlying course of the disease.
"If the industry came up with a treatment for this chronic neurodegenerative disease, it would be a massive blockbuster but no one wants to do it alone," she says. "Our board came to the discussion that if we want to find a cure for Parkinson's one day, we have no choice but to pursue this major roadblock."
For Mrs. Safra, one of the founding board members of the Michael J. Fox Foundation, the initiative hits close to home: Her late husband, a banker who founded a private bank that he sold to American Express and the Republic National Bank of New York, had struggled with Parkinson's disease. Mr. Safra died in 1999 in a fire at the couple's Monaco home. Mr. Safra had given millions to museums, hospitals, medical research and Jewish causes—constructing or saving synagogues in Israel, Madrid and France as well as building hospitals in Brazil and Israel.
After her husband's death, Mrs. Safra took over the Edmond J. Safra Philanthropic Foundation and vowed to uphold her husband's legacy.
"My husband had a visionary belief in the power of human ingenuity to conquer disease," Mrs. Safra says. "During his lifetime he was an open-handed supporter of medical research and patient care around the world. In his memory, it is my privilege to sponsor the initiative…in order to speed improved treatments and a cure for Parkinson's disease."