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.

I was telling everyone to "feel their boobies": a breast cancer survivor

Leigh Hurst, 37, said she never intended to start a business when her cancer was diagnosed in 2004. She just wanted to spread the word among her friends and other young women that they needed to be serious about breast self-examination. "Basically, I was telling everyone I met to 'feel their boobies,' and when I walked with a group of friends in the Avon breast cancer walk in New York, I set up a one-page web site, put 'Feel your Boobies' on our T-shirts and printed an extra hundred to sell," she said. She sold all the T-shirts within minutes, and donated the proceeds to Komen for the Cure.

Her group was filmed by the Today TV show, and when she returned home to Harrisburg, Pennsylvania, she started filling orders that were coming in through the web site.

After much thought, she decided her company should be a nonprofit, to raise awareness and encourage breast self-exams. She put her parents to work in her house, filling orders and handling customer service, and quit her job.

Advice: Find a way to raise others' awareness to prevent them from getting your disease, and help them detect it early, like Leigh.

Read another breast cancer survivor story, or read more from the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

She was well enough to start making plans again: A cancer survivor and entrepreneur

Ms. Banu Ozden is a computer scientist whose cancer was diagnosed in 2001. She said from the time she started dealing with the disease, she wanted to design a system that would make it easier for patients to keep track of their medical costs and also help them find errors in billing and reimbursement records.

In 2005, when teaching computer science at the University of Southern California, she was told that she again had cancer and that this time the disease had spread.

She took a leave of absence from her job and moved to New York so she could be treated at Memorial Sloan-Kettering Cancer Center. Within a month of her diagnosis, she was feeling well enough to start making plans again.

Once again in the morass of medical bills, she knew she wanted to proceed with her company. She started Smart Medical Consumer with her own funds and investments from friends and family.

Advice: See if you can help those struggling with a disease you have learned how to face, as Banu is doing.

Read one of our cancer survivor entrepreneur stories, or read more from the NY Times article on October 25 by Marci Alboher.

Concussion is the white elephant in the room: Safer football helmets

Years ago, as a quarterback wearing the uniform and helmet of the Harvard University football team, Vin Ferrara sustained several concussions. Now his photo appears in the newspaper, helmet in hand, again, in a very different way.

Vin has developed a radically different football helmet through his company, Xenith LLC. Instead of using foam inside the helmet to cushion impacts, this helmet uses shock absorbers filled with air. The helmet seems better at preventing concussions than are the standard foam-filled helmets. Mike Oliver, the head of the helmet certification agency, said, "Concussion is the white elephant in the room right now when it comes to helmets, and I'm cautiously optimistic about how low these numbers [from the impact tests] are."

This is important because high school athletic programs usually use reconditioned old helmets with degraded foam padding. While these helmets continue to prevent skull fractures, they fail to prevent many concussions. Studies find that 10% to 50% of high school players each season sustain concussions, whose effects range from persistent memory problems and depression to coma and death.

For example, Max Conradt, a high school player in Yachats, Oregon, was wearing a 20-year-old helmet when he sustained hits that left him comatose for two months and left him permanently impaired.

Hopefully the new helmet will keep football players safe.

Vin Ferrara had concussions, and from that experience, he developed a product to prevent others from getting the injuries he did. He joins other entrepreneur patient advocates in businesses aimed at preventing or reducing the harm of multiple sclerosis, Lou Gehrig’s disease, and other conditions, as described on this blog. Now that’s worth cheering for!

Advice: Consider if there are ways you can help others beat your disease.

Read one of our football concussion stories, or read more from the source article by Alan Schwarz in today’s New York Times.