Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Archive for the month “March, 2013”

Immortal Bird Reading at Claremont McKenna College

I will be reading from Immortal Bird at Claremont McKenna College in Claremont, California on Monday, April 1.

The reading, preceded by an 11:30 am luncheon, will take place at 12 noon at the Marian Miner Cook Athenaeum.

My presentation is part of the Athenaeum’s semester long series on bioethics, as it applies to research, medical practice, and the health care system.

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“Urgency and Tenderness”: Immortal Bird in New York Times Sunday Book Review

Today’s (March 24, 2013) New York Times Sunday Book Review has a nice blurb on Immortal Bird in its Paperback Row column.
Under the weekly section devoted to “Paperback books of particular interest,” Ihsan Taylor writes:

IMMORTAL BIRD: A Family Memoir, by Doron Weber(Simon & Schuster, $16.)
“With urgency and tenderness, Weber chronicles the efforts to save his eldest child, who was born with a congenital heart defect, and their struggles against the received wisdom and arrogance of the American medical establishment.”

I don’t know who Ihsan Taylor is but I am most grateful for his kind words and succinct, telling summary.

Ask Congress for More Research and More Data Collection for Congenital Heart Disease

Last year after I published Immortal Bird, I was contacted by an impressive group called Adult Congenital Heart Association . They asked me to join them in Washington DC to help lobby Congress for more funding for congenital heart disease (CHD).

CHD is the most common birth defect in the U.S. and a leadinng cause of death in infants. Damon was afflicted with CHD and I knew only too well how little research and data was available for families grappling with this condition. Today there are over 2 million people in this country who live with CHD.

I was happy to go to Washington DC in March 2012 and to meet with various members of Congress to ask them to support more research through the National Institutes of Health and more surveillance and data collection through the Centers for Disease Control. I also gave them copies of Immortal Bird and told them Damon’s story.

This week on Tuesday March 19 there was another Lobby Day for CHD but unfortunately I could not attend due to a Board meeting in New York. However, the need is just as acute as ever for more NIH and CDC funding, and we are also asking members of Congress to join the Congressional Congenital Heart Disease Caucus.

The federal government is currently functioning under a continuing resolution at 2012 funding levels, due to expire at the end of this month, when the government will then run out of money. The House of Representatives approved its version of the bill last week and now Senator Tom Harkin included an ammendment to the Senate version that preserves life-saving NIH research for health issues and CDC funding specifically for congenital heart disease. Those who understand the critical nature of this issue should contact their Representative and ask him or her to support more research and more data collection for CHD and to join the Congressional CHD caucus.

For more information, please contact Amy Basken, Public Policy Manager at the Adult Congenital Heart Association: abasken@achaheart.org.

Immortal Bird Blog Tour, Video Trailer & New York Times Sunday Book Review Inclusion in Paperback Row

I have signed on for a blog tour in May with TLC Tours. They have already posted an announcement about Immortal Bird which you can read on their site. Run by Trish Collins and Lisa Munley, they come highly recommended by fellow authors and by my publisher Simon & Schuster.

Simon & Schuster has also posted a video trailer about Immortal Bird which you can view at Simon&SchusterVideos on YouTube.

And we recently learned that the March 24 issue of The New York Times Sunday Book Review will feature Immortal Bird in its Paperback Row column.

On April 1, I will do a reading at Claremont-McKenna College in California. Details tk.

Thanks for the beautiful letters that keep coming.

More Reader Response to Immortal Bird

Here are two recent reader letters about Immortal Bird, one just received today. Each covers a major theme of the book: the first and primary one was to portray a vivid and remarkable teenager and to give back life where it had been been stolen; and the second was to convey the challenges of dealing with a flawed medical system when trying to save a loved one.

Letter 1
I finished the book, yesterday. It took me less time, and more time than anticipated. I raced through Parts I and II and then slowly had to carve out the appropriate time for Part III.

It is an amazing piece of writing and a devastating story that you laid out beautifully. I’m humbled to have read it, to have a glimpse of Damon and to know the struggle your family endured.

I dog-eared one excerpt that I found especially poignant; the brief encounter between Damon and your high school Shakespeare teacher, Irwin Wolfson. I know why it spoke to me; the theatrics, the shakespeare, the colorful language, the chiding . . . there are many many reasons. I imagine that’s why you included it. Free will vs causal determinism. . . “Possibly it can make a difference, at the margins – which is where most of life transpires, so it’s not unimportant – but nothing can change the final outcome of a single fate.” Alas, I still don’t know what I believe; likely I never will….

The book is a beautiful portrayal of an incredible life. I think Damon and I would have been fast friends. I’m happy to feel like I met him, if only on the page.

Letter 2
Just got done reading your book on Damon and your families experience with living with serious illness…the good, bad and the ugly.

What struck me was the incredible honesty that was apparent in the book; no sugar coated false hope. Just a story that ended in a way that of course was unwanted.

My sincere sympathy in your dealings with the medical establishment ( another striking point in the book ). My experience the last few years with those that know and are doing “what’s in your best interest,” have been head exploding to say the least.

Not sure how many notes you get, but it’s always nice to get an anonymous pat on the back – “ya done good.”

—–

I remain deeply grateful to all the individuals who take time out not only to read Immortal Bird, but to write me such personal and affecting letters about the book. Thank you.

Indie Spirit Awards, Ted Talks, DPLA Launch Video & Future Weather Panel

I had a hectic week of foundation activity, flying to LA for last Saturday’s Independent Spirit Awards, where we had three nominated science-themed films: Robot & Frank (Best First Screenplay); Valley of Saints (Best Cinematography) and Here (Best Cinematography). None of our films won–top prizes went to better-known films like Silver Linings Playbook, Beasts of the Southern Wild and The Sessions, with all the stars attending because they were in town for the Oscars the following day. However, getting nominated is a big deal and a great way to introduce incredibly talented new filmmakers to the industry, which happens at the pre-awards cocktail reception outside the giant tent on the beach, as well as during the awards show itself.


From left to right: Nick Bruckner, Valley of Saints Producer, DW, Chris Ford & Jake Schreier, Robot & Frank writer and director and Chris’s girlfriend at the cocktail reception before the Independent Spirit awards show, hosted by Adam Sandberg.[/caption]

I managed to touch base with several studio executives, producers and distributors–we are still helping Valley of Saints and Future Weather get into theaters and have several new features slated for shooting in 2013, including Basmati Blues with several well-known stars to be announced soon and Midnight Sun with Jesse Eisenberg, Diane Kruger and Emile Hirsch. And we still hope to secure full financing for Michael Almereyda’s Experimenter with Peter Saarasgard and to welcome the film festival premier of Rob Meyer’s Birder’s Guide to Everything with Ben Kingsley.

I also caught up with Paula Malcomson, the actress who befriended Damon and took him under her wing on the set of Deadwood, where he made his national television debut in 2005. As readers of Immortal Bird may recall, Paula flew out to New York to speak at Damon’s memorial service, an act of enormous kindness and generosity, and I now gave her a copy of Immortal Bird in the new paperback edition. She remembered the day I took the photo of Damon that is on the cover–he was standing before one of world-champion bull-rider Gary Leffew‘s wild horses. Paula was seen most recently in Sons of Anarchy and in The Hunger Games series–she plays Jennifer Lawrence’s mother–and is the female lead opposite Liev Schreiber in a new Showtime drama Ray Donovan that is now shooting and will air in June 2013.

After 36 hours in LA, I flew back to New York for three days of proposal work and other activities–including an interview for a video we will screen April 18-19 in Boston for the official launch of the Digital Public Library of America (DPLA)–and then I flew back to LA for a TED dinner and all-day executive session featuring many noted speakers. I ran into at least half a dozen grantees and heard several interesting talks while discussing the Open Translation project with the TED people.

Within 36 hours, I was back on another plane to New York and drove straight from the airport to the Rerun Theater in DUMBO, Brooklyn, where there was a premiere screening of Future Weather. After the screening I participated on a panel about the process of grantmaking that developed this film, which included major support from Sloan along with the Nantucket Film Festival and IFP. The film’s director Jenny Deller and the producer Kristen Fairweather talked about the challenges of making an independent film. The New York Times had that day published a favorable review of the movie, “Science Anchors an Unsettled Life,” and it will run in New York for another week before rolling out in a limited release to select theaters across the country. It is not only an intelligent film that tackles climate change but it deals with three generations of women in one family–with several exceptional performances–it portrays the way Americans really live–in trailers and dysfunction but with love and decency–and it was written, directed and produced by women, a lamentably rare occurrence.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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