Fund targets Alzheimer's

Ruth Dobrushin lives in a world where Alzheimer's disease is blotting out her memory like an eclipse.

The Monroeville woman, 83, no longer drives because she forgets where she lives. She sometimes addresses her sons by their late father's name and insists that her parents, dead at least 24 years, are alive.

"I'm so confused where I'm at all the time," she said. "That's my trouble."

Help could be on the way for the 4.5 million Americans with Alzheimer's. Venture capitalists Jeffrey and Jacqueline Morby, of Shadyside, and Henry F. McCance and Phyllis Rappaport, of Boston, have set up the Cure Alzheimer's Fund with offices Downtown and in Boston. Its goal is singular: supporting research that slows, stops or reverses the disease in 10 years.

Their fund, a supporting organization of The Pittsburgh Foundation, is an example of venture philanthropy, the business-oriented direction that charitable giving has taken since the 1990s. The fund, which raised $1.4 million last year and expects to raise $3 million this year, has begun granting money.

"It's great to see people exploring and being innovative," said Judie Donaldson, executive director of the Downtown-based Grantmakers of Western Pennsylvania. "People talk about the fact that the business model is influencing both philanthropy and nonprofits today, and this is an example of that."

Alzheimer's disease is the most common cause of dementia among people 65 and older. The number of Americans with the disease is expected to nearly triple to 13.2 million by 2050, according to the U.S. Department of Health and Human Services. The number of Pennsylvanians with Alzheimer's is expected to grow from 280,000 in 2000 to 392,000 in 2026.

The combined tab for Medicare and Medicaid in Pennsylvania will grow from nearly $8.3 billion last year to an estimated $10 billion in 2010, according to the Lewin Group, health care consultants in Falls Church, Va.

"It's a big problem not only for our country and the world, but also Pennsylvania, which is the second-oldest state," Jeffrey Morby said.

Morby, 69, is a former vice chairman of Mellon Bank. His wife is the former managing director of TA Associates, a venture capital and private equity management firm with $10 billion in assets.

He decided to devote one-third of his retirement time to charity and, like the other founders, apply business principles to the Cure Alzheimer's Fund. The project operated quietly for two years, but the founders decided to go public on this month's 100th anniversary of the discovery of the disease.

Unlike many older foundations, the Cure Alzheimer's Fund focuses on one issue and has a timeline to accomplish its goal -- discovering genes linked to the disease. There are about 30,000 genes in the human genetic map. Four genes have been conclusively linked to the development of Alzheimer's. Four to seven more "high-risk factor" genes may exist.

Researchers can't apply for money; the fund uses an advisory board to find and finance the best scientists. The board is chaired by John S. Lazo, director of the Fiske Drug Discovery Laboratory at the University of Pittsburgh School of Medicine. The founders pay for all overhead. One hundred percent of any dollar contributed by the public goes directly to research.

"It's certainly an attractive way to find investors," Donaldson said.

The Chicago-based Alzheimer's Association uses the traditional method of peer review by scientists worldwide who evaluate research proposals. That group gave $20 million to a broad range of research it hopes will nurture the next generation of Alzheimer's scientists.

"The people attached to the Cure Alzheimer's group are very good scientists," said Bill Thies, the association's vice president for medical and scientific relations. "They need money. Whether that's the right way to grow the field, who knows?"

Alzheimer's occurs when nerve cells in the brain stop working and die, usually beginning in the part of the brain responsible for short-term memory. In 1906, German psychiatrist Alois Alzheimer discovered that brains of patients with dementia and memory loss had excessive amounts of an insoluble amyloid plaque in spaces between nerve cells.

Dobrushin, who lives with her son, Howard, a psychotherapist, spends her days at the Anathan Club in Squirrel Hill, a program for people with dementia. Participants exercise, sing, work on crafts and play word games to keep their minds sharp.

Howard Dobrushin said his mother's abilities are diminishing.

"In the last year and a half, she stays more and more in her room and has become more isolated," he said.

Zehava Waltzer, manager of Anathan Club, worries about the coming onslaught of Alzheimer's cases.

"It's scary when I think what's down the pike," she said. "We really need to look at expanding our home and community services."

Research into Alzheimer's has advanced rapidly in the past two decades, said Dr. Steven DeKosky, director of the Alzheimer Disease Research Center at the University of Pittsburgh. In 1984, the National Institute on Aging began funding Alzheimer's research centers. Thirty-two centers nationwide now share research.

Pitt's center developed a temporary dye that, when injected in patients, sticks to the amyloid plaque in the brain and "lights up" during a PET scan, allowing doctors to diagnose Alzheimer's. The center is developing a dye that could be marketed to hospitals.

Early diagnosis means patients can get drugs to slow progression of the disease by boosting neurochemicals in the brain. Two anti-amyloid drugs in development show promise of stopping the disease by preventing buildup of amyloid plaque, DeKosky said.

Other areas of research include genetic therapy, the impact of lifestyle and diet, use of stem cells and better care for patients.

Despite these advances, experts call the fund's goal of a cure in a decade ambitious.

"It's a goal that doesn't leave you much wiggle room," Thies said. "Whether it's reasonable or not is difficult to predict."

Researchers might slow or even stop the disease in people whose brains aren't severely damaged, DeKosky said, but curing people whose brains are damaged would be more difficult.

"We don't know how to protect circuits that are lost," DeKosky said. "But slowing or stopping it in someone who doesn't yet show symptoms? Yeah, we might see that in 10 years."

Fighting Alzheimer's

Alzheimer's disease is the most common cause of dementia among people 65 and older. About 4.5 million people in the U.S. have the disease, a number expected to nearly triple by 2050.

In 1984, the National Institute on Aging funded five Alzheimer's disease research centers and now pays for research at 32 centers, including the University of Pittsburgh. Recent developments include:

Drugs: Four U.S. Food and Drug Administration-approved drugs are used to treat Alzheimer's. Aricept, Exelon and Razadyne treat mild to moderate symptoms by slowing the breakdown of a neurotransmitter critically important to memory formation. Namenda, the newest drug, treats moderate to severe symptoms by lowering levels of a neurotransmitter that can damage neurons. Two more drugs that could stop progression of the disease are about two years away from potential approval.

Early identification: To prevent Alzheimer's, doctors need to identify presymptomatic victims. "Pittsburgh Compound B," a dye recently developed by Pitt scientists, makes a plaque found in excessive amounts in the brains of people with Alzheimer's "light up" in brain scans. The Alzheimer's Disease Neuroimaging Initiative, started in February, will collect brain scans, blood and tissue samples from about 60 clinics in the United States and Canada to look for markers of early Alzheimer's.

Genetics: Four out of about 30,000 genes in the human genetic map have been conclusively linked to the development of Alzheimer's. Mutations in three genes are linked to the rare, early-onset form. A fourth gene can indicate late-onset Alzheimer's. Scientists estimate that four to seven more such "risk-factor genes" might exist.

Stem cells: Using stem cells to treat Alzheimer's is a controversial topic that gained attention after President Reagan was diagnosed with the disease. There is potential in stem cells, which can grow into nerve cells and could repair brain damage. The brain is made of many kinds of cells, and getting stem cells to places that might benefit the brain would require surgery. Stem cells are unable to return memories stored in sections of the brain already destroyed by the disease.

Lifestyle: Research is increasing into the role lifestyle choices play in developing Alzheimer's. Studies have found a reduced risk among people who eat fish frequently and whose diet is high in unsaturated, unhydrogenated fats. People who participate in intellectually stimulating activities -- ranging from doing crossword puzzles to obtaining graduate degrees -- and those who are physically active also seem to have a lower Alzheimer's risk.

Sources: U.S. Department of Health and Human Services, Alzheimer's Association and the Alzheimer Disease Research Center at the University of Pittsburgh

To learn more

• For more information about Alzheimer's disease, call the Cure Alzheimer's Fund at 412-261-7191 or log on to www.curealzfund.com.