MarfanLife.net | News blog

The Schaberg’s sent a picture of Christopher and Nicholas Burrus playing at the NMF Conference dinner. The music was very nice. The whole dinner was wonderful and the music was just perfect for it.

This is TwinSong, Nicholas and Christopher Burrus, with their Mom, Danielle. TwinSong played strings during the dinner at the NMF Conference in Philadelphia earlier this month.
I snagged a couple of their business cards when I was there.

Who better to write about how to take care of one’s body than someone who has lived with health problems all one’s life? Roanne Weisman, who has Marfan syndrome, has written four books — one large and three smaller — about “choosing the best from alternative & conventional medicine.”

Press-Telegram - The story of a boy named Mo
“Life’s a blast until somebody notices you’re different.”

That’s the tag line for an upcoming film called “Mo.” It goes into production later this month on Long Island.

MercuryNews.com | 02/21/2006: “’Rent,’ the film adaptation of the Tony- and Pulitzer Prize-winning Broadway musical, arrives on DVD in a two-disc edition (list price $20.99) that proves quality can win out over quantity. While the extra features are few in number, they are so substantial and thorough that viewers won’t have any complaints. … “… The set’s most substantial supplement, “No Day But Today: The Story of Rent,” is an informative, poignant feature-length documentary about the show and its creator, Jonathan Larson, who died suddenly on the night of the musical’s final dress rehearsal from a tear in a blood vessel near his heart caused by Marfan syndrome, a connective tissue disorder. …”

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“This newest novel from Raymond Benson follows his six original James Bond novels, (as well as three James Bond film novelizations and three short-stories) the novels Evil Hours and Face Blind, as well as the author’s two recent Tom Clancy’s Splinter Cell adventures.

The synopsis for this suspense thriller (found on amazon and the author’s official site) follows:

Diane Boston lives with her Marfan syndrome-afflicted 13-year-old son in a suburb of Chicago and teaches social studies at the high school, with the students even voting her Teacher of the Year. But she has some dark secrets. Her ex-husband Greg always suspected that Diane kept things from him, but he has no idea just how right he is. When Diane’s son, David, finds a box of unmarked videotapes and watches one of them out of curiosity, he discovers that it’s a hardcore adult movie from the late 1970s. … ”

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“A special two-disc set of the �Rent� film, based on Jonathan Larson�s Tony and Pulitzer Prize-winning musical of the same name, will arrive in stores Feb. 21 from Sony Pictures Home Entertainment.”

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Casting Call: “‘MO’ is the true story of a boy growing up with Marfan Syndrome that will be made into a feature-length film. We are currently looking for a kind, charming, soul-filled 15 to 20 year old Caucasian boy with Marfan Syndrome to play the title character. No previous acting experience is required. The film will be shot on the south shore of Long Island, NY in the summer of 2006.”

High roller - TV & Radio - Entertainment: “Jabe Babe. It’s an unusual name for an unusual woman. She spent her first seven years with her schizophrenic mother (father unknown) before shuttling between foster families until she was a teenager. As an adult, she worked as a dominatrix in the sex industry, a career she enjoyed but eventually tired of. Her most striking feature is her extreme height - 188 centimetres - due to a genetic connective-tissue disorder called Marfan Syndrome. “

SignOnSanDiego.com > News > Features — Leap of Faith: “… Ask cast veterans about that night — most heard the next morning of Larson’s exit from an aneurism (related to Marfan’s Syndrome) — and there is still visible pain. Taye Diggs (Benny in ‘Rent’), a big man with sculptural looks and a savvy gaze, tells about the cast being called unexpectedly to the theater that morning (’We thought maybe the show was closing’), then he chokes up. So Anthony Rapp (Mark in the show) tells how one or two stunned souls started to sing, ‘and we knew we had to find ourselves for Jonathan. As the songs came out of us, we felt galvanized but we were in shock. …’”