A curmudgeon with a purpose: An activist disease foundation fighting Parkinson's Disease

He had long been the chief executive officer of Intel Corporation. Now Andrew Grove, 71, has Parkinson's Disease. So seven years ago, he launched the Grove Foundation, to combat Parkinson's. He also plays an ad hoc advisory role to the Michael J. Fox Foundation, to which he has donated $40 million. The creation of these two foundations in 2000 marked the beginning of targeted Parkinson's research.

At the time, Andrew thought that stem cell research would lead to a cure. By financing such research, which the government had decided not to do, he hoped to speed the cure.

While he is dissatisfied with progress to date, he realizes this approach has some unexpected results: "The most important thing we have figured out is the various things we didn't know and should have known."

As Joseph Nocera notes, "You have to be doing targeted research even to discover what you need to discover."

Andrew sees his role as being a curmudgeon with a purpose, whose job it is to push and prod and not let anyone become satisfied with the progress they have made.

His foundation is an activist disease foundation that is impatient with the pace of research and is using its money to stimulate researchers to advance in new ways.

Advice to those concerned about Parkinson's: Consider donating to an activist disease foundation.

Read a story about a similar effort against multiple sclerosis.

Thanks to Joseph Nocera for the source article in the New York Times of November 11.

An extension of his work as a doctor: A memoir by a sufferer of Lewy Body disease

Fifteen years ago, he had been a member of the Cardiology "Dream Team" assembled by the Boston Celtics to evaluate Reggie Lewis after he collapsed during an NBA playoff game in 1993. And he was a professor at Harvard Medical School.

But nowadays the former marathon runner is stooped, and shuffles when he walks. Most notably, the disease has robbed him of the ability to communicate clearly, logically and quickly. Dr. Graboys has Lewy Body dementia, a syndrome that affects a third of Parkinson's patients.

Even with this humbling disease, Dr. Graboys was eager to tell his story because he thought it might be helpful to others facing their own medical struggles. He wanted to capture his experience on paper quickly, because he didn't know how much longer he would be able to tell his story.

He contacted Peter Zheutlin to write his story. Dr. Graboys was an unusually gifted clinician and an unusually compassionate doctor who believed his most important diagnostic tools were his ears; he listened, and his patients loved him for it. In turn, he valued each patient's trust as a gift offering a window into the human condition.

Over the course of a year, he and Peter met twice a week at his home in a suburb of Boston, and he gave Peter an intimate tour of his life and his mind Peter's book tells of the toll the illness has taken on his sex life. It may be too frank for some, but Dr. Graboys was intent on being as brutally honest as possible. As a physician, he had created an atmosphere in which patients felt safe in disclosing their most personal concerns. He understood that mny of them were relieved to find a physician with whom they could talk comfortably about sex.

The book became a focal point of his life after he had to retire from medicine in 2005. Writing it was an extension of his work as a doctor. He proved that despite what he lost, he could still share abundant knowledge and wisdom.

Advice to people with a chronic illness: Tell your story to share your life lessons.

Read another story about Lewy body disease.

Thanks to Peter Zheutlin for the source article in the June/July issue of Metrowest Magazine.

At least my dog feels better about it: Michael J. Fox as patient advocate

Swaying from the unrelenting progression of Parkinson's disease, actor and patient advocate Michael J. Fox challenged the biotechnology industry Monday at its massive annual convention: "Who's funding innovation today?” Michael, who began a foundation to fund research into therapies for Parkinson's, criticized the industry for not placing enough emphasis on risk taking that he said could lead to therapies for 20,000 of the world's 30,000 identified diseases.

Not enough emphasis is being placed on the importance of translating basic scientific discoveries into new therapies, he said. For instance, the drug he takes is 40 years old. But the industry recently turned out a new antidepressant for dogs. My symptoms may not be getting better, but at least my dog feels better about it," he joked.

While patient advocates have always lobbied the biotechnology and pharmaceutical industries, Fox is emblematic of the greater voice and role they now hold. In the face of stagnant federal funding for basic scientific research, patient advocacy groups such as the Michael J. Fox Foundation are pouring millions of dollars into research through grants. "It's about spending the money more effectively," he said. He suggested the industry rethink its definition of success and focus less on capital return and getting on the cover of Science or Nature magazines - and instead judge success by the effect on patients' lives.

His words carried extra clout because his foundation gave $7.5 million through seven grant programs to 16 companies. His foundation aims to spend the money in the best possible way: helping take away some of the barriers or risks that prevent promising discoveries from moving down the long and expensive pipeline to commercial products.

Michael is putting his money where his heart is. He is leveraging his celebrity and his money to find a cure. His energy, commitment and imaginative steps toward this goal make him a patient advocate hero.

Advice: Look for ways you can use your assets and skills as an effective patient advocate. Be Like Mike.

Read another of our patient advocate hero stories, or Terri Somers’ source story.

Paul Farbstein

My father, Paul Farbstein, succumbed last week at age 79 to Parkinson’s disease after a gallant, uncomplaining 15-year battle. He was content, and accomplished; he was loved, and loved his family. He found jobs for many people during the 30 years he ran an employment placement business. He served as the President of a Rotary Club chapter, working hard in Rotary International’s long fight to eradicate polio worldwide.

He was quite healthy for most of his life, but encountered some medical misadventures in his last few years. One of his stories (about “Raul”) appeared on this blog.

Hospice staff cared for him for the last two weeks of his life. Their care was greatly compassionate and respectful to him and his family members. His family and oldest friends were able to say good-bye and to get help in coming to terms with his loss. He received only the treatment that was necessary and appropriate, which is remarkably rare in our medical system.

Donations in his memory can be made to the American Parkinson’s Disease Association, for research.

Advice for those near the end of life: Hospice care can make a hard path far easier. In the Atlanta area, Hospice Atlanta (404-869-3000) has my highest recommendation.

Read Art Buchwald’s hospice story.