July 23rd, 2008 |
Published in
News stories, Obituaries
Victor McKusick; Genetics Pioneer - washingtonpost.com
… Initially drawn to cardiology, he soon turned to the study of a relatively rare inherited disorder, Marfan syndrome. His fascination started with one unusually tall patient, with a dangerous weakening of the aorta and a detached retina. Dr. McKusick made his first breakthrough by discovering that the complex group of Marfan symptoms all stemmed from a single inherited gene. …
July 23rd, 2008 |
Published in
Obituaries, Research

Hopkins genetics pioneer dies at 86 — baltimoresun.com
Dr. Victor A. McKusick, a Johns Hopkins professor who pioneered the field of medical genetics and spent his career exploring how a person’s genes predisposed them to medical disorders, died of cancer today at his home in Towson. He was 86.
July 23rd, 2008 |
Published in
News stories
Mount Desert Islander - Bar Harbor man coins new word
BAR HARBOR — The word “genomics” – a term that has gained widespread usage in the scientific community – is now in the Oxford English Dictionary OED. Its entry includes credit to The Jackson Laboratory’s professor emeritus and Bar Harbor resident Thomas H. Roderick, Ph.D., for coining the term.
[Blogged because of Victor McKusick. I found this article when searching for an article about Dr. McKusick's death].
July 16th, 2008 |
Published in
Marfan individuals, Obituaries
Test results awaited in death of Germany-based soldier | Stars and Stripes
A coroner is awaiting test results on a Grafenwöhr, Germany-based soldier who died June 27 while on leave in Guntersville, Ala.
Spc. Toney L. Goble II, 24, was found dead in the bedroom of a friend. According to Marlon Killion, the coroner for Marshall County, Ala., Goble showed no sign of trauma.
July 14th, 2008 |
Published in
Video with article
factualTV - Jabe Babe - A Heightened Life - trailer
A tall girl with a tall story, 31 year old ‘Jabe Babe’ measures six foot two inches 188cm, works as a dominatrix and has a life threatening genetic condition called Marfan Syndrome. This hybrid documentary merges fiction and non-fiction forms and inhabits the technicolour world of the tall woman. This is the story of Jabe’s life as the outsider, which provokes questions about society’s desire for sexual, visual and genetic conformity.
July 10th, 2008 |
Published in
Losartan, Marfan individuals, News stories
Hope For Marfan Syndrome Sufferers
BOSTON WBZ ? Justin Phillips suffers from Marfan Syndrome, a potentially fatal genetic disorder, which runs in his family.
“I’m the youngest of nine. Four of us are affected by Marfan,” he said.
July 8th, 2008 |
Published in
News stories
Welcome to I Have Marfan A new blog, by Geoff Saavedra.
July 6th, 2008 |
Published in
News stories
Tall Like The Sunflowers
A blog by a Marfan mother, wife of a Marfan man.
July 3rd, 2008 |
Published in
Marfan individuals, News stories, Video with article
7online.com: Fighting Marfan Syndrome 7/03/08
NEW YORK WABC — There’s a genetic condition that some children are born with that causes their legs and arms to grow faster than normal. It can lead to serious problems later in life. But a new study is hoping to change that.
Marfan Syndrome is an illness that runs in families, and it can kill at an early age. Jonathan Larson, the writer of the musical “Rent,” died when his aorta ruptured on the night of the play’s opening. The rupture was the result of Marfan. There is a new study aimed at preventing this type of catastrophe.
Gabrielle Wales is tall for 12, taller than her mother Kathy, with long, lanky arms and legs. These are features of Marfan Syndrome, where the arms and legs grow faster than normal and where joints are too stretchable/.