August 2009
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The patient's dilemma: Where should I donate my GIST tissue?
by Marisa Bolognese
The fact is GIST is a rare disease and as a result researchers simply do not have enough tissue samples to do the research needed to find a cure.
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Researcher update in Pediatric GIST
by Cristina Antonescu, M.D.
When we first started working on pediatric GIST more than five years ago, our initial observations suggested a homogenous clinical and genetic subset, with predilection for females, gastric location and wild-type genotype.
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Impressive turnout for sixth annual Swiss GIST patient group meeting
by Cindy Meier
(Cousin of Helga Meier Schnorf, LRG member) On April 24, 2009, approximately 85 GIST patients, caregivers, GIST health care experts, Life Raft Country liaison reps from Italy and Germany, and representatives from the pharmaceutical industry, gathered in Zurich, Switzerland for the sixth time.
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Blay appointed new EORTC president
by Estelle LeCointe
I’m really proud and honored to inform you that Dr. Jean-Yves Blay (Centre Léon Bérard à Lyon, France) has just been appointed as the new President of the European Organization for the Research and Treatment of Cancer (EORTC) for three years, thus succeeding to Dr. Martine Piccart from Belgium.
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August 2009 clinical trials update
by Jim Hughes
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An open letter from Jacqui Bromberg
by Jacqui Bromberg
On August 3, 2009, 22 year-old, pediatric GIST patient, Jacqui Bromberg passed away. She left this note, which she wrote at age 17, just after she was diagnosed.
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GIST & CML patient reps from all over the world meet in Lisbon for Patient Summit
The 7th annual international “New Horizons Conference for Organisations Representing People with CML or GIST” was held this year in Lisbon, Portugal from June 26 to 28.
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A changing of the guard for the Chicago Life Raft Group
by Erin Kristoff
After many years of faithful service to his fellow GIST patients, LRG member, Dick Kinzig is stepping down as the Chicago-area Local Group Coordinator.
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Drug prices influencing doctor’s decisions
by Leigh Matano
Oncologists across the nation are attempting to come to terms with the enormous expense of cancer drugs, some of which can cost up to 100,000 dollars a year per patient.
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Wakeling sets out as team of one, gets ore riders and raises 7x her goal
On June 19-20, Ali Wakeling and her fellow Team GIST members completed the 260km Ride to Conquer Cancer from Vancouver, British Columbia, in Canada to Seattle, Wash.
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ACCESS Act to be reintroduced in Congress
In April (“Abigail case denied: Court rules against patients' right to choose”) & September 2008 (“How long must dying patients wait for justice?”), the LRG reported on the use of drugs on a compassionate- use basis for patients with terminal disease
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From the mailbox...
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June NIH clinic another success!
The clinic kicked off with an informative presentation by Dr. Constantine Stratakis of the National Insititutes of Health.
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New Canadian group meet for 1st time!
GIST Sarcoma Life Raft Group Canada hosted a gathering at the Plaza 500 Hotel in Vancouver, Canada on Monday evening, June 29.
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Becker fought bravely for 12 years
Mark fought cancer for over 12 years with courage and ferocity. His determination and strength will be remembered by all who know him.
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NJ/NY GISTers meet!
On June 14, GISTers gathered from all over the New York/New Jersey area at the home of LRG Executive Director, Norman Scherzer for an informal gathering. A few old friends were delighted to see each other again, as well as welcome new friends into the fold.
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Did you Know...
by Jerry Call
In phase III trials, low white blood cell counts were often associated with a better response to Gleevec.
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Congratulations Dr. Brian Rubin!
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Michigan GISTers meet...hey wait a minute!
We finally got a picture of the May 9 Michigan meeting!
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Kitty Katt Kimbell passes away at 60
Kitty Katt Kimbell died April 24 at her Tuolumne, Calif. home after a long struggle with cancer and other illnesses. She was 60.
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Spanish GISTers meet in Madrid
GIST survivors and caregivers gathered from Spanish-speaking countries all over the world on June 24 in Madrid.
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Renate Croll , 65, loved the beach
After a courageous fight with cancer, Renate Croll, 65, of Millersburg, died June 17, 2009, at the home of her daughter in Pensacola, Fla.
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