Archive for May, 2007

Rett Advocate: Juli Wilson Marshall: 1959 – 2007

Chicago lawyer who represented a child with Rett Syndrome for free drowns during a triathlon fund raiser for the Leukemia and Lymphoma Society

Source

Chicago Tribune on line edition, May 5, 2007

Summary

Mrs. Marshall, of Lake Forest, died Wednesday, May 2, of what medical professionals said was an accidental drowning. Competing in a triathlon Sunday in St. Petersburg, Fla., she was found in the water during the 0.93 mile swim, local officials said. Mrs. Marshall, 48, was rushed to a nearby medical center where she later died. Mrs. Marshall entered the race through Team in Training, a program that raises money for the Leukemia and Lymphoma Society, something that made sense to those who knew her.

"I think it was her passion for life, the way she cared about anybody who was underprivileged," said Robin Hulshizer, a close friend and colleague. "One of the things that troubled her most was that there were kids that weren’t in the position of privilege that her children had."

Those children included Lindsey Ross, a northwest suburban high school student suffering from Rett Syndrome, a rare neurological disorder. Mrs. Marshall read an article about Lindsey, who was fighting over her civil and educational right to stay in high school with other students, and called the girl’s mother, Diane Ross. She asked if she could represent Lindsey in court, for free.

"I was blown away by the fact that a complete stranger wanted not only to help Lindsey, but in such a big way and with such a big heart," said Diane Ross of the ongoing case. "She was so passionate about wanting to be Lindsey’s voice in court."

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Rett Press: Big Bucks: Novartis focusing on rare diseases such as Rett Syndrome

Source

Forbes Magazine, May 21, 2007 edition

Summary

"For years big drugmakers ignored rare diseases. Now Novartis aims to reap billions of dollars by focusing on them. Rare diseases were long relegated to the backwaters of the drug business, targeted by tiny biotech companies, if at all, and often ignored by drug giants in their search for billion-dollar franchises. But Novartis is in pitched pursuit of some of the more obscure maladies in the world."

The article indicates that "Novartis has compounds in preclinical tests that target Rett syndrome, a rare inherited brain disorder".

Link

http://forbes.com/forbes/2007/0521/060_print.html

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Rett Syndrome Fundraiser: Cape Cod Strollathon

Event

3rd Annual Cape Cod Strollathon

Date

Saturday, June 2, 2007

Location

South Yarmouth, Massachusetts, USA

Starts at Laurence MacArthur Elementary School

1175 Route 28, South Yarmouth.

Event Timetable

Registration begins at 8:45 a.m.

Strollathon begins at 10:00 a.m.

More Information

Contact Jennifer Endres at 508-394-3011 or capecodstrollathon@yahoo.com

Press Coverage

Rett Syndrome breakthrough just what the doctor ordered

http://www.townonline.com/barnstable/homepage/x301605418

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