John Mellencamp, new spokesman for Canadian Hydrocephalus / Spina Bifida Group

Mellencamp lends star power to Winnipeg spina bifida group

American rocker suffered from disease as a child

CBC News

John Mellencamp, who was born with spina bifida, is now the spokesman for the Winnipeg chapter of the Spina Bifida and Hydrocephalus Association of Canada.

The well-known rocker was in and out of hospital as a child with the birth defect, which affects about 80 babies born in Canada each year.

Looking for a way to raise funds in competition with better-known health charities and illnesses, a member of the organization discovered the Mellencamp connection on the internet.

Jennifer Cook, a graphic designer with the Winnipeg chapter that helps children with the disease, tracked down the Indiana native and asked him whether he would help.

He agreed just days later.

“I just e-mailed him back and I said, ‘Awesome. You don’t know how much this means to spina bifida and to myself,’” she said. “Often people don’t really realize what spina bifida is, but now [this] will help people.… It will stop them to say, ‘He has it?’”

Continue Article

Spina bifida is the result of a neural tube defect that affects the spinal cord and backbones and, in varying degrees, affects the ability to walk. Most babies born with spina bifida will also have hydrocephalus, which creates cognitive difficulties and learning disabilities.

Mellencamp is allowing the group to use his image, and is apparently donating some of his artwork to be auctioned off.

His generosity will help in so many ways, said Bonnie Hidlebaugh, who heads the Winnipeg chapter.

“We are ecstatic. We could not possibly have ever dreamed that somebody like John would come on board as our spokesperson and make people aware.”

She said just the knowledge that Mellencamp survived the disease despite its challenges and established a successful career will speak volumes.

Mellencamp is on tour and scheduled to perform in Winnipeg in February. Members of the local spina bifida chapter hope to meet with him then.

We need your photos!

The Hydrocepalus Association is looking for photos to include on its new website. Please use the following link to submit your photos. Thank you.

http://hydroassoc.12hna.com/flickr

Sherman Alexie Wins National Book Award

First sentence of his book: I was born with water on the brain.

Seattle’s Alexie wins the National Book Award

By Mary Ann Gwinn

Seattle Times book editor

PREV 1 of 3 NEXT

SETH WENIG / AP

Sherman Alexie accepts the National Book Award for Young People’s Literature for his book “The Absolutely True Diary of a Part-Time Indian” at the 58th National Book Awards in New York, Wednesday, Nov. 14, 2007.

SETH WENIG / AP

Winners of the National Book Awards, from left, Robert Hass, Cindy Johnson (accepting for husband Denis Johnson), Sherman Alexie and Tim Weiner are pictured in New York on Wednesday.

DEAN RUTZ / THE SEATTLE TIMES

Sherman Alexie wins National Book Award.

Related

• Archive | Q&A | Alexie captures the voice, chaos and humor of a teenager

National Book Award winners from Washington

Sherman Alexie, 2007 young people’s literature award for “The Absolutely True Diary of a Part-Time Indian.”Timothy Egan, 2006 nonfiction award for “The Worst Hard Time.”

Pete Dexter, 1998 fiction award for the novel “Paris Trout.” (Dexter now lives on Whidbey Island, but the honor came before he moved to the state).

Charles Johnson, 1990 fiction award for the novel “Middle Passage.”

Theodore Roethke, 1959 poetry award for “Words for the Wind”; 1965 poetry award for “The Far Field.”

Mary Ann Gwinn

Information

The National Book Awards: www.nationalbook.org

Sherman Alexie’s Web site: www.fallsapart.com

Seattle author Sherman Alexie has won the National Book Award for his highly autobiographical novel for young people, “The Absolutely True Diary of a Part-Time Indian.”

Alexie got the news Wednesday night at the awards ceremony in New York. He won for best book in the young people’s literature category. In his acceptance speech, Alexie, an author of 19 books of fiction, poetry and essays, quipped: “Wow … I obviously should have been writing YA (young adult) all along.”

He credited Alex Kuo, a creative-writing teacher at Washington State University who gave him an anthology of Native American writing. It helped persuade him to become a writer: “I had never read words written by a Native American. The first one was a poem about frying baloney … I grew up eating fried baloney. The other was a poem by Adrian Lewis, and the poem had the line, ‘Oh, Uncle Adrian, I’m in the reservation of my mind.’ I knew right then when I read that line that I wanted to be a writer. It’s been a gorgeous and magnificent and lonely 20 years since then.”

“I am in post-traumatic shock-stress syndrome,” Alexie said later. “It’s just astonishing. It’s all because 27 years ago, I went up to my mom and dad and asked if I could leave the rez school, and they said yes.”

He thanked his wife, his two sons, and his editor, “who edited me, even though I can be an arrogant bastard.”

The National Book Award is one of the most prestigious awards in literature. When Alexie was named a finalist in October, he said the “very, very autobiographical” nature of the book made the attention it has received even more gratifying.

The protagonist in “Absolutely True Diary” goes on a journey very similar to the one Alexie has made — a young Indian who leaves reservation life to test himself in the outside world.

“It’s scary to put a very close version of my story out in the world — there’s a lot of emotional capital at stake,” he said at the time.

Winners in the four competitive categories — fiction, nonfiction, poetry and young people’s literature — each receive $10,000.

Alexie’s competition for the prize in the young people’s literature category included “Skin Hunger: A Resurrection of Magic, Book One” by Kathleen Duey; “Touching Snow” by M. Sindy Felin; “The Invention of Hugo Cabret” by Brian Selznick; and “Story of a Girl” by Sara Zarr.

Alexie, a Spokane/Coeur d’Alene Indian, is the fifth Washington state resident to win the award. “Absolutely True Diary,” published by Little, Brown, was illustrated by Seattle artist Ellen Forney.

Alexie, 41, has been critically acclaimed for his work, a mix of insight and honesty, compassion and outrageous humor. He also has had a successful career as a filmmaker, playwright and teacher, and other books and films have drawn on his Indian heritage. But “Absolutely True Diary” may be the book that’s closest to the life he led.

Like Alexie, 14-year-old Arnold Spirit survives being born with hydrocephalus (water on the brain), becomes an honors student and ultimately leaves the Spokane Indian reservation for a white school. He battles the alcoholism of his parents, the death of family members, poverty and despair.

In a September interview, Alexie called himself a “reluctant role model…. I write aware of that. Especially with this book, certainly, whose theme is about escape, I hope it encourages all sorts of trapped people to feel like they can escape.”

Other winners Wednesday night included “Time and Materials” by Robert Hass (poetry); “Legacy of Ashes: A History of the CIA” by Tim Weiner (nonfiction); and “Tree of Smoke” by Denis Johnson (fiction).

Freelancer John Freeman contributed to this report.

Copyright © 2007 The Seattle Times Company

Gabriel’s Life Goes Live!

Today we launch an experiment in social networking. We are excited and a little apprehensive, kind of like throwing a party and not being too sure who will come. This is the first social networking site that focuses on a medical condition. The first time a community dealing with a specific medical condition has been encouraged to reach out to each other and been given the tools to do it.

There are concerns and there have been challenges. Will people want to talk about their experiences, especially since it involves their health? What if only crazy people participate and the content is inappropriate? What if all of the stories are scary and terrible? We don’t know what will happen. But sharing stories and experiences has been happening throughout history and it seems like a good idea.

Guess the only way to find out what will happen is to get this party started!

Integration

Had a meeting today to talk about SalesForce integration for Gabriel’s Life. We need to be able to verify membership in the Hydrocephalus Association for people to create stories or blogs on Gabriel’s Life. The process is overwhelmingly complicated and I understand nearly none of it. The org chart to explain the steps looks like a map of a bumble bees flight through a flower patch. So glad Jodie, Colin and Laura are dialed in. Brought Sophia with me to the meeting, she had a great time drawing tattoos on my  arm with highlighter pens. My profound insight was to realize Starbuck’s Frappacinos are glorified milk shakes.

Office Space

I share an office with my boss, David LaPlante. Most of the time this works out well. He is gone this week/month leaving me a quite space to write Gabriel’s story. He probably wouldn’t mind, but I am glad he is not here to see my crying while I work on it.

Too Many in the ER

Today I started calling people to talk to them about participating in Gabriel’s Life. I had been dreading these calls, not sure I would be up to the task of telling my story and hearing theirs. As happens most of the time, what I was dreading was totally off base.

I made five calls. Three of the people I contacted where in the emergency room dealing with some kind of hydrocephalus issue, when I dialed their number. All of them reminded me of why this project is important.

Meet with Stanford

TJ Crawford, Josh Kenzer and I flew down to San Jose to meet with folks and talk about the hydrocephalus project. We meet Pam Wells from Lucile Packard Children’s Hospital and Dory Kranz from the Hydrocephalus Association. We had lunch at a nice restaurant, so glad we didn’t meet at the hospital, nit sure I could walk through the doors.

Everyone is excited about the project and enthusiastic to be working together. Pam is going to discuss the project with her people at Stanford. On the flight home, I have a killer headache.