Long, thin fingers typing away Marfan Life Long, thin fingers typing away
Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~ Curvature of the spine
Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness
Weakening of the connective tissue, most dangerously of the aorta
Marfan Blog
(news stories, events, newly discovered links)

Thursday, November 25, 2004

Raw Faith disabled

Breaking News: Raw Faith disabled A U.S. Coast Guard cutter is underway 50 miles off Portland to assist the three-masted sailing vessel Raw Faith, which radioed for help around 1 a.m. Thursday.

Passengers and crew are not in danger.

I didn't realize there was an online journal for the Raw Faith but there is, here: Accessible Sailing Adventures


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Elmore scholarship fund-raiser tomorrow in Billerica, Mass.

Elmore scholarship fund-raiser tomorrow in Billerica, Massachusetts: "BILLERICA Police Sgt. Steve Elmore will host his annual day-after-Thanksgiving fund-raiser tomorrow in memory of his brother Sean Elmore, with all proceeds to benefit scholarships for Billerica High School and other town organizations.
Elmore said he has a host of raffle prizes, but it's the silent-auction items that will be sure to generate a buzz."


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Sunday, November 21, 2004

Catching trouble

Catching trouble Jennie Logsdon-Martin would rather be reaching her long fingers into a jar, grabbing a fist-size glob of brilliant pink salmon eggs, squirting them with Marie's Sticky Shrimp Scent and baiting a hook.
...
Good luck, Jennie!


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Thursday, November 18, 2004

The Marfan Trust

The Marfan Trust The Marfan Trust was set up in November 1988 to fund research into the cause and possible prevention of Marfan Syndrome and to assist with patient support.

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Patients facing a long reach into the future

Patients facing a long reach into the future"Marfan in the 21st century has a very different prognosis from the one it had at the time of Lincoln’s birth to illiterate parents in a log cabin at the start of the nineteenth century.

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FSU plays with No. 55 in mind

FSU plays with No. 55 in mind: "[Ronalda] Pierce was a shy 18-year-old from the rural town of Ashburn, Ga., when she arrived at Florida State as a Parade magazine third-team All-America. With time, she gained confidence off the court and her play on the court improved.
Now her former teammates must prepare for a season without the player who likely would have been their starting center and primary post presence."


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Wednesday, November 17, 2004

Pemaquid Man Ready to Set Sail

Pemaquid Man Ready to Set Sail: "Later this week, if the wind and the waves are right, Danny Sicotte of Pemaquid hopes to sail out of Rockland Harbor on board a 100 foot sailing vessel, RawFaith."

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Sports: FSU has several reminders of ex-teammate

Sports: FSU has several reminders of ex-teammate: "TALLAHASSEE - You can't miss Ronalda Pierce.

She's featured on the first page of this season's Florida State women's basketball media guide. An action cutout picture and her nickname, 'Nautica,' is emblazoned on a T-shirt her parents and siblings wear. Her jersey number, 55, is on a chic sneaker Nike specially designed for the Seminoles.
Then there are the less tangible, but no less real, signs of her presence. 'We're dedicating this season to her,' sophomore guard Alicia Gladden said. 'She was a good player, a good teammate, a good friend. We know that she wants to be here.'"


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Sunday, November 14, 2004



Little Boy Faces Big Operation: "Mom Valerie Toporowski watches while Anthony Tiernan points out surgical steps in his Tell Me About My Operation book from the B.C. Children's Hospital. "

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Tallahassee Democrat | 11/14/2004 | MEMORY OF A TEAMMATE

Tallahassee Democrat | 11/14/2004 | MEMORY OF A TEAMMATE: "The blueprint for leading the program through the grieving process arrived, surprisingly enough, in the mail. Sympathy cards and letters of support flooded in from all over the country as news spread at the passing of Pierce, who died of an aneurysm brought on by Marfan syndrome. Dozens came from basketball programs big (Louisiana Tech, Duke and Purdue) and small (Youngstown State, New Mexico State and Texas Pan-American)."

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Friday, November 12, 2004

Heart of Iowa Chapter of the NMF

Heart of Iowa Chapter of the NMF was approved as a chapter of the National Marfan Foundation on October 30. Congratulations!! They've always been a strong and active group -- now they're an official chapter.

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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
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