My funny bone fell out: The Fonz and undiagnosed dyslexia

He says he doesn’t blog, because he can’t spell. But he did send email for the first time, in desperation. It takes him about two and a half months to write a children’s book.

Life has changed a lot for 61-year old Henry Winkler, who played The Fonz in the long-running TV show, "Happy Days."

He’s now on a book tour for his 11th children’s book in a series about the fourth-grade boy "Hank Zipzer," who is based loosely on his own childhood, growing up with undiagnosed dyslexia. He calls Hank "the world’s greatest underachiever," mirroring his own struggles as a student.

At Hank’s age, Henry still could not read. With Hank, "the emotion is real; the frustration and arguments are real. The humor is exaggerated," he says. A young fan in Missouri wrote that he laughed so hard at Hank’s adventures that "my funny bone fell out of my body!"

Henry overcame his learning differences and received a Master of Fine Arts from the Yale School of Drama before his 11-year run on Happy Days. He is also a founding member of the Children’s Action Network, a nonprofit that sponsors briefings for writers, producers and directors on children’s issues.

Henry says becoming an actor was the only way he could express himself "because I wasn’t confident enough to express myself through other methods." He is grateful that "every day, some sort of my dream comes through, in the way of writing, producing or directing. A lesson for my readers is that there is no limit to what they can do. They may believe that they’re stupid, that they’re limited. But really, it’s just that they learn differently. I want them to know their dreams aren’t impossible."

Advice to people with dyslexia: If you will it, it is no dream.

Read another of our celebrity patient advocate stories, or read
Susan Kalan’s source story.

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.

A point guard has done more to publicize this than my last 400 publications: Eye cancer

Derek Fisher showed up with his baby girl Tatum at the New York office of Dr. David Abramson at Sloan-Kettering Cancer Center on Monday. The doctor was able to inject a strong anti-cancer drug into her eye’s blood vessels, probably killing the retinoblastoma (eye cancer) and saving her eye.

The following day, Derek, a point guard now in the playoffs with his Utah Jazz teammates, spoke at length about the family’s ordeal, generating publicity. Then he flew back to Salt Lake City, and helped his team win Game 2. “A very good point guard has done more to publicize this than my last 400 publications combined. It’s quite extraordinary,” Dr. Abramson said.

Advice for parent advocates: Use your contacts to spread the word about successful new treatments.

Read another of our celebrity patient advocate stories, or Peter May’s source story in today’s Boston Globe, “In the Bonus Situation: Fisher scored points for cancer treatment”.