Wednesday, June 18, 2014





Sunday, July 13th, 2014



You're Invited
1st Annual GIST Awareness Day

LOCATION
Peggy Notebaert Nature Museum, 2430 N Cannon Dr., Chicago, IL 60614

ACTIVITIES
  • Morning - Informational session for patients and caregivers*: 9 AM-1 PM
*Breakfast and lunch will be provided
  • Afternoon - GIST Awareness Day Festival: 1 PM - 4 PM

HELP US MAKE AND DISPLAY 20,000 ORIGAMI BOATS
AND RAISE $200,000 FOR GIST RESEARCH

GIST Awareness Day was created by the Life Raft Group to help address the lack of education and recognition surrounding GIST (GastroIntestinal Stromal Tumors)- a rare cancer of the GI tract- and help break down the barriers to funding, research, treatment and diagnosis that this causes. To raise awareness among the general public about GIST we are attempting to break the Guinness World Record for largest display of origami boats among other activities at this fun family festival.

REGISTER
Both morning and afternoon are free.

Call 847-302-5133 (Jim Hughes)
-OR-
Self register at: www.gistawarenessday.org

MORNING

8:00 AM - 9:00 AM Registration/Breakfast/Mingling
9:00 AM - 9:10 AM Welcome, Mildred Menos, LRG Asst. Director of Programs
9:10 AM - 9:45 AM The Surgeon's Role in Co-management of Patients with GIST, Dr. Karl Bilimoria, Surgical Oncologist, Robert H. Lurie Comprehensive Cancer Center, Northwestern Memorial Hospital
9:45 AM - 10:30 AM GIST Treatment Advancements, Dr. Bruce Brockstein, Medical Oncologist, Director of the Kellogg Cancer Center, at NorthShore University HealthSystem
10:30 AM -10:45 AM Coffee Break
10:45 AM -11:30 AM Managing Emotional and Relationship Changes after a GIST Diagnosis, Dr. Erin Braule, Post-Doctoral Fellow in Psycho-Oncology, Cancer Wellness Center
11:30 AM - 12:30 AM Lunch, Round Table Discussion with Panel of Experts

AFTERNOON

Tasting tables from Chicago’s top bakeries and restaurants, arts and crafts, giveaways, live band and plenty of entertainment for the kids will make this a wonderful day for the whole family.  Featured in the afternoon will be the chance for you to contribute to our Guinness World Record attempt for the largest display of origami boats.

Friday, May 2, 2014

Meeting Sunday, May 4 in Palatine


The next scheduled meeting of the Chicago Area Chapter of the Life Raft Group (LRG) is Sunday, May 4 at 12:30 PM at Wellness Place 1619 West Colonial Parkway Palatine. 

All Chicago area GIST patients and caregivers are invited to attend…especially those new to GIST.

The agenda includes:

  • A time to update our personal GIST stories
  • LRG Calendar events
  • Plans for the next meeting 

Our custom is to share a potluck of appetizers and refreshments at the start of the meeting. 


If you plan to join us please RSVP to  tjhughes43@comcast.net.  

Tuesday, January 21, 2014

Chicago Area Chapter of LRG Meeting - Sunday, January 26, 2014


To heck with the Polar Vortex … the Alberta Clipper … and the Pineapple Express.  It’s time for a meeting!

The next scheduled meeting of the Chicago Area Chapter of the Life Raft Group is Sunday, January 26 at 12:30 PM at Wellness Place 1619 West Colonial Parkway Palatine. 

All Chicago area GIST patients and caregivers are invited to attend…especially those new to GIST.

If you plan to attend please RSVP to my personal email:  tjhughes43 at comcast.net

Also, our custom is to share a potluck of appetizers and refreshments at the start of the meeting. So let us know if you plan to bring something.

The agenda includes:

  • ·         A time to update our personal GIST stories
  • ·         LRG Research update
  • ·         Plans for the next meeting

Saturday, August 31, 2013

Meeting at Cook County Hospital, Saturday, November 9

The next meeting of the Bill Buchanan Chapter at Cook County will be Saturday, November 9, 2013.  

All GIST patients, family and support are invited.  The meeting begins at 12:30 pm.  Food and refreshments will be available as well as free parking in the visitor lot on Polk Street.

The meetings are held in dining room 2A in the cafeteria. Use the Main Hospial Elevator to the basement and follow the signs.

 Meeting contacts are Barbara Cleveland, RN 312-864-7256 or Bill Addis, Patient Advisor 202-276-0289.  Please call Barbara or Bill if you plan to attend. Check this post later for agenda items and any updates.

Friday, April 12, 2013

GIST Day of Learning Chicago 2013

Cost:

  • GDOL is Free.
  • Breakfast and Lunch are provided.
  • Reduced cost parking is available. 
When:
  • Sunday, May 5, 2013 from 8:00 AM to 5:00 PM
Where:
  • The Baldwin Auditorium - First FloorThe Robert H Lurie Medical Research Center of Northwestern University.
  • 303 E. Superior St.
    Chicago, IL  60611
Directions:

  • NMH Campus map
  • Entrance at 303 E. Superior.  Entrance also at 303 E. Huron
  • Discounted parking is available for $7 at the Huron/St. Clair Garage, 222 E. Huron Street.  Discounted parking coupons will be sold during on-site
    registration.
Registration:

Agenda:

  • 8:00 AM               Breakfast & Mingling
  • 9:00                    Welcome-Janeen Ryan
  • 9:15-10:00           Surgical Options-Jeffrey D. Wayne, MD, FACS
  • 10:00-10:15          Break
  • 10:15-11:00         Clinical Trials Explored and Explained-Jim Hughes
  • 11:00-12:00         Question and Answer
  • 12:00 PM-1:00      Lunch
  • 1:00-1:45             The Role of Oncology For the Treatment of GIST -
                                 Al B. Benson III, MD FACP
  • 1:45-2:00             Break
  • 2:00-2:45             The Pathology of GIST- William Laskin, MD
  • 2:45-3:45             Questions and Answers
  • 3:45-5:00             Wrap Up-Mingling
Contact:
UpDates:

Tuesday, April 9, 2013

At AACR 2013 ARIAD Reports that Ponatinib Overcomes Resistant KIT Mutations in GIST

The pharmaceutical company, Ariad, issued a press release today (April 9, 2013)  in conjunction with a report delivered at the AACR annual meeting in Washington, DC. Ariad presented pre-clinical data showing that it's drug Iclusig (ponatinib) is active against resistant mutations in GIST.

You can read the full press release here.

Quotes from the press release include:

“These data provide important support for the use of Iclusig in patients with GIST who have become resistant to prior tyrosine kinase inhibitor therapy.”

"ARIAD plans to begin a Phase 2 trial of Iclusig in patients with GIST in the second quarter of 2013."

Monday, February 25, 2013

FDA approves Stivarga (regorafenib) for GIST

The FDA today announced the approval of Stivarga (regorafenib) for GIST. 

“Stivarga is the third drug approved by the FDA to treat gastrointestinal stromal tumors,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “It provides an important new treatment option for patients with GIST in which other approved drugs are no longer effective.”

You can read the fill press release at the link below:

FDA approves Stivarga for advanced gastrointestinal stromal tumors