2022
December
Focus on GDOLs/CTOS Sheds New Light on #GISTresearch/A Conversation with Dr. Jason Sicklick/A Conversation with Patient Advocate Sarah McGoram/Thank You to GISTer Dina Wiley/The Perfect Gift/Night to Fight Cancer/Water of Life Fall Edition
September Special Edition – Life Fest New Orleans & GIST Awareness Day
February
Partners Forever – Ira & Kay Stolzer/What It Means to Be a GIST Mentor – Santy DiSabatino/It’s Time to Tell the Stories 2022/Side Effects Spotlight – Muscle Cramps/Clinical Trials Update – Feb 2022/Thank you – Lidia Kornienko, Ukraine/Dr. Neeta Somaiah Joins Our Medical Advisory Board/Love, Actually/Fundraising News: Water of Life
2021
December
A Positive Spin for 2022 – Jimit Mody/An Exceptional Volunteer and Friend of the LRG – Chelsea Madia/#GIST Wishes/Clinical Trials Update
October
Thriving & Challenging Yourself While Living with GIST – Elyse/Thriving & Challenging Yourself While Living with GIST – Stijn/Common Side Effects & How to Manage Them/A Conversation with a Few of Our Global GIST Mentors
June
Rare Diagnosis Fosters a Passion for Biomarker Testing & Self-Advocacy – Bill Borwegen/Spotlight on LRG Global Representatives – Nandini Dabbir, India/The Eyes Don’t See What the Mind Doesn’t Know – GIST Education in México
February
April Stephens, Long-Term Survivor/Resources for Pregnancy & GIST/It’s Time for Action in 2021: The LRG Focuses on Biomarker Testing/Patient Advocacy in Brazil – Instituto Oncoguia – Luciana Holtz/The LRG Welcomes Young Jae Kim as Our Newest Liaison/Cupcake Records Honors Lorie Perry
2020
December
Delivering Hope: A Modern Day Miracle of Birth – April Lopossa/Normal Life Interrupted – Angel Selena Rodriguez, Venezuela/2020 Women in Sarcoma Virtual Gala Recap/In Memoriam – Carlos Baldor, Sr./Points of Light during 2020/GIST & Creativity Part 2 – John Paul Zagami/GIST & Creativity Part 2 – Tim Watkins/GIST & Creativity Part 2 – Claire Monaghan/GIST & Creativity Part 2 – Christine Gonzales/GIST Patient Registry – Changes to Medical Updates
October
Highlighting Exceptional Professionals in the Sarcoma Field/GIST & Creativity – Ellen Mayer, Painter and GISTer/GIST & Creativity – Jacqui Bartlett, Photographer & GISTer/GIST & Creativity – MaKayla Evans, Medical Assistant, Artist, GISTer/How Can B12 Help GIST Patients?/Australian GISTers Volunteer as LRG Country Liaisons/A Blessing from GIST – Super Max & Bryce/In Memoriam – Dr. Nikhil Guhagarkar
June
You Are The Hope/Making The Right Decisions in Tough Times/Long-Term Survivor Stories – Chuck Korte & Dina Wiley/Heroes on the Frontline: Dr. Matthew Lurin/Heroes on the Frontline: Eric Lindberg/Heroes on the Frontline: Dr. Jonathan Trent
April
Hope & Obstacles Along a GIST Journey – Arun Krishnan/Marlene Nei – Volunteer, Advocate, and Caregiver/When Your Mind Wanders – 10 Tips to Stay in the Moment/Science Forum Convened to Better Understand the State of GIST Research/GISTEntertainment Virtual Events
February
Building a Network of Rare Specialists (Dr. Margo Shoup)/Management of Adults with SDH-Deficient GISTs/The State of GIST Treatments/Passion Translates to Advocacy Across the Globe/One Perspective on the BLU-285 Trial (avapritinib/Ayvakit)/Whisky Lovers Gather at WOLF/Andrea Shedler – Major Donor/Fighting Anxiety & Depression on Your GIST Journey/Resources for Your Cancer Journey/Top Ten Tips for Caregivers/Spokane GISTers Gather for Food & Sharing Along the Journey/Steve Pontell – Newest Board Member
2019
December
Sisters of the Heart for a Cure/Increasing Survival without Borders/Are YOU Seeing a GIST Specialist?/How Technology Is Changing the Way We Look at Health Data, & How Patients Are Critical to Its Success/NORD Hosts Summit/Making the Most of the Holiday Season/Night to Fight Cancer Lights Up the Night for #GISTresearch/First LRG Gist Mentor Training Takes Place in Wayne, NJ/GIST Support UK & PAWS-GIST!/The LRG Welcomes Newest Board Member Eric Biegansky/Global Representative Spotlight – Amelia Yeo/The Life Raft Group Partners with GIST Survivor on Facebook
October
A ‘Clinical Trial of One’ – Douglas Morgan/LRG Data Leads to Change/Health Decisions Tour in Latin America/News from the 17th NIH Pediatric and Wildtype GIST Clinic/Increasing the Quality and Efficiency of Clinical Trials/Finding a Ride to Your Doctor’s Appointments/Across the Border Virtually/Chicago Patient Support Group/Volunteer Spotlight/A Few Minutes with GIST Expert – Dr. Gina D’Amato/Global Representative Spotlight/LRG Cookbook Fundraiser/First Symposium on Personal Control of Genomic Data for Research Held at NIH/Teaming up with MyPART/Collaborating with the NCCN FOUNDATION/Partnering with Selnet
August
GIST Awareness Day – Chile/GIST Awareness Day – Colombia/GIST Awareness Day – Spain/GIST Awareness Day – Mexico/GIST Awareness Day – Brazil/GIST Awareness Day – Argentina, Guatemala, Honduras, Peru/GIST Awareness Day – Kenya/GIST Volunteer: Enrich the LRG Community with your Gifts & Talents/GIST DO IT All Year Long
June
Hope Prevails – Fatema Suterwala/International Focus on the Power of Real World Data to Enhance Advocacy Efforts/Stepping into Personalized Side Effect Management with SideEQ/The First GIST DO IT Walk NJ Held in Loving Memory of Ted Wolf/International Collaborations – Salud con Datos 2019/Fifth Annual Water of Life Fundraiser 2019/On the Speaking Circuit with The LRG/Update on a New Clinical Trial Offered to Eligible GIST Patients/ASCO 2019 – Networking & Collaboration in Action/ISPOR 2019 – The Future of RWE & Improving the Quality of Patient Survival/In Memoriam – Ron Agypt/In Memoriam – Nikki Morales/State Leader Spotlight – John Abrams, Colorado, USA/Global Representative Spotlight – Adriana María Garzón Pinzón, Colombia
February
Faces of Courage – Eve Evidon/Crossing the Finish Line/GIST is a Marathon, Not a Sprint/Pediatric & SDH-Deficient GIST Consortium Update/A Conversation with Breelyn Wilky, M.D./LRG Science – Real World Evidence – Post/Holiday Campaign 2018 Update/State Leader Spotlight – Wendi Lax, Maryland, USA/Global Representative Spotlight – Florence Thwagi, Kenya/In Memoriam – Erlinda Adajar
2018
December
Searching for Hope – A Mother’s Mission to Save Her Son/Chile Cancer March Brings Change – Advocacy in Action!/New in SDH-Deficient Research – The Paraganglioma* Preclinical Project/Vitrakvi Approved/An Exciting Time for GIST Research/Night to Fight Cancer 2018/Michigan GIST Day of Learning/Overcoming the Holiday Blues/GIST Resolutions/Global Representative Spotlight – Verónica Armand Ugón, Uruguay
October
The Healing Power of Adventure/The Magic of Clinical Trial Math/The Pediatric & SDH-Deficient GIST Consortium/Biden Cancer Summit Highlights/Elsie María Hernández Saborío – In Memoriam/The Life Raft Group – Part of the Conversation at CTTI/The LRG Welcomes New Board Member/Check Out Our New Look!/New Horizons Convenes in Vienna
Summer 2018
The Werners – Finding the New Normal Living with Wildtype GIST/New Technology Developed Which Can Predict GIST Patient’s Response to Drugs with Amazing Accuracy/LRG Discusses Importance of Real World Evidence in GIST Research at the FDA/Salud con Datos – Partnering to Share Real World Data in Latin America/Clinical Trials Transformation Initiative Member Meeting/Scottsdale Arizona hosts the first GDOL of 2018/Believe in Hope – A GIST Story/Global Spotlight – Introducing Two New Global Representatives/In Loving Memory of Lawrence B. Freed
2017
Fall Winter 2017
It’s a journey: Our experience on clinical trials/Why do cancer patients join clinical trials?/Global GIST Advocates Convene at LRG Headquarters/Clinical Trials Offer Hope for GIST Patients/LRG Presents Poster at CTOS, 2017/Night to Fight Cancer Overwhelming Success/Life Raft Group Canada’s 6thAnnual GIST Day of Learning a Success/The Life Raft Group: A Love Story/Annual Holiday Campaign Seeks to Make an Impact/Andrea Torres: A story of hope and optimism/2017 GIST Award Goes to Dr. Adrian Siefert/CTTI Meeting Promotes Innovation/Howard Greenley: Pioneer GIST Warrior, Loving Husband, Father, and Grandfather/Cancerversary – April Stephens-Celebrating 17 Years!/Cancerversary – Peter Bick-Celebrating 20 Years!/Cancerversary – Samantha Wexler
Summer 2017
Social Media Helps Rescue Croatian Patient/NIH Clinic Combines Research, Knowledge, and Hope/In the beginning…Patient-reported outcomes/GIST/Trials – A data-driven website to help patients navigate GIST clinical trials/SideEQ – Collaboration in Action/La Jolla Provided a Beautiful Backdrop for Our Three-Day July Event/Dana Pearson – “Until We Meet Again”/LRG attends Partnering for Cures in Boston/In loving memory of Beverley Lynn Burrows
June
Understanding Kidney Disease and GIST/Advocating for Rare Diseases Law in Chile/GIST Superhero Profile: Cindy Farr/Save the Date: GIST Awareness Day July 13/Cancerversary – Angela Howell/2017 GDOLs Kick Off in Miami and New York City/Become a #Hero4Cancer-Help Expedite Research Outcomes/The Life Raft Group Celebrates 15 Years of Accomplishments/This is not the end – A survivor’s story
February
The Life Raft Group Patient Registry in Review 2016/Collaboration Lays the Groundwork for Breakthroughs in GIST/Support from the Heart – Caregiver Suzy Burke/We Love Our Donors – A letter from Norman Scherzer/Countdown to Rare Disease Day 2017/Life Raft Group hosts Open House for local members/Cancerversary – Martha Zielinski – 14 years/Cancerversary – Kimberly Glass, 10 years/In Memoriam: Barry Hawkins, Courageous Fighter/Welcome to Steve Pontell, the LRG’s new volunteer Attorney
2016
December
Help MaKayla realize her dream: Donate to double patient survival/Living a life of dignity and hope: Henzo Kenya/GIST/PRIME: An Interactive Patient Registry/A year in review: 2016 Executive Director’s report/Night to Fight Cancer event raises $130,000/LRG advocacy efforts at home and abroad/CTOS provides international networking opportunities/LRG by the numbers December 2016/LRG Networking at Partnering for Cures/CANCERVERSARY – Elsie Maria Hernandez/In Memoriam – Larry Selkovits, LRG Board Member and Shelley Selkovits, his wife of 56 years
October
Improving quality of life with SideEQ/Using data to improve health in Latin America/LRG member La Verne Cook: Tackling side effects/Time for Medicare comparisons is here/Flu season 2016-17 updates/Last stop in the LRG 2016 GDOL series: St. Louis/Cancerversary – Paula Vettel15 YEARS/Cancerversary – Mike Ginsberg10 YEARS/Joyce (Hodnett) Fredericks: Loving wife, mother and grandmother/In Memoriam – Anita Scherzer
June
Chris Carley: Goodbye to a Hero/The LRG Stresses Management of Side Effects/Water of Life: A Night to Remember/LRG Advocates Making a Difference: OVAC Lobby Day/Nutritional Series Part 3: What is Angiogenesis?/How to be a GIST Hero: Donating Tissue for GIST Research/GIST Day of Learning: Education and Support for Area GISTers/10 Things That Happen When You’re Diagnosed With Cancer/LRG to Participate in Moonshot Project/Advocacy: Patients Shall Be Held Harmless/Cancerversary – Ed Cohen 9 YEARS
April
GIST keep swimming: Words to live by/Brief from ASCO’s Clinical Cancer Advances 2016/Leading GIST experts weigh in at ESMO/Second Water of Life event to make a “big splash”/Nutritional series part 2: Absorbing nutrients after surgery/Webcast provides perspective on generic imatinib/Becoming a “Patient Champion”: Strategies for caregivers/Local Advocacy: LRG supports NJ bill A-2337/Life Fest will be celebrated July 15th – 17th /CONGRATULATIONS – Teena Petersohn/Side effects management vital to the quality of life/CANCERVERSARY – Susan Brandt/Rebecca Theresa Harper – Inspiration to others, woman of faith
February
GIST Collaborative Tissue Bank: A researcher’s perspective/Generic imatinib approved in the US for CML: What does it mean for GIST patients?/How to S.T.O.P. caregiver burnout/The heart of the matter: Cardiac health for GIST patients/On the road with the LRG: NCATS presentation/All we need is LOVE/Cancerversaries: Sara Gould and Gerard van Oortmerssen/David Lee Kors avid outdoorsman, passionate volunteer
2015
December
John Poss: Fifteeen years and still kickin’/Adjuvant imatinib study updates results/Partnering for Cures seventh annual meeting held in NYC/Connective Tissue Oncology Society (CTOS) Annual Meeting Update/Top GIST specialists present at California GDOL/Society for Integrative Oncology holds 12th annual conference in Boston/Genetic Alliance event invites collaboration/On the road with the LRG patient registry/Encouraging rare disease connections at the NORD Conference/Patient-centered care focus of Quintiles panel discussion/Sebastian Bauer awarded the 2015 GIST Group Switzerland science prize/CANCERVERSARY – Chuck Korte 19 Years/Gerardo “Jerry” Marra, Renaissance man, man of faith/In Memoriam – Ian Rahimi, beloved son and brother
October
Night to Fight Cancer: legacy event raises $130,000 for GIST research/Our “Silent Song”/Mechanisms of disease persistence in gastrointestinal stromal tumors/Patient advocacy: you can make a difference/Your pathology report: the key to understanding your GIST/Informative webcast sheds light on mutational analysis/Cancerversary – 4 YEARS Jeff Bernstein/Erwin “Red” Johnson, LRG member, avid outdoorsman/In Memoriam – Pat George
August – The Celebration Issue
June
Being your own warrior: LRG member Karen Darnell’s personal battle/LRG Research Team meets in Cleveland/Planning a healthy diet post-gastrectomy/Life Raft Group at CTTI: Rethinking clinical trials/Potential combination treatment for imatinib-resistant GIST explored/Social Security disability benefits for GIST patients/Sixth annual meeting of Alianza GIST in Miami/Miami hosts New Horizons meeting/GIST support Austria: A community of hope/ShowUsYourRare Gallery/Patient Registry presented to Columbia University/2015 GDOL’s on the road: Chicago and Miami/First annual Water of Life event makes big splash/Cancerversary 10 Years – Josalin Dunn/Michael Logan Christopher: Blessing to all who knew him/In loving memory of Marilyn Lee Hoch
April
#ShowUsYourRare for GIST Awareness Day/Jeff Davis: Fan of miracle comebacks/Fatigue reduction: Moving towards a better future/Love is at the heart of Henzo Kenya/Study indicates use of adjuvant imatinib therapy for GIST increasing/Virtual tumor board expands to adult GIST cases/“Water of Life” will flow at LRG event/Advocacy in Chile moves forward: an update/LRG state leaders connect in first virtual meeting/Cancerversary: Pat Berg
February
NCI team identifies a key molecular defect in SDH patients/Piga Fernandez: Advocate for Change/Dr. Monica Anderson: Inspirational Survivor/#GIST31Wishes campaign/Life Raft Group joins the global community in honoring World Cancer Day 2015/Understanding generic drugs/Developing GISTKids.org/LRG research team member Anette Duensing receives 2014 GIST award/Life Raft Group attends Partnering for Cures meeting/2015 GDOL series kicks off in San Diego/Dating with GIST: navigating the waters/Cancerversary
2014
December
Life Fest 2014: A celebration of the LRG community/Epidemiology of GIST: Interview with Dr. Jason Sicklick/LRG-NIH Virtual GIST Tumor Board goes global/10 ways to combat the flu/Tips for relieving your holiday stress/One Hundred and Thirty Thousand Wishes: Life Fest 2014/Life Fest 2014: What’s new in the science of GIST?/Our 2014 Annual Report/Spread cheer with charitable giving through online shopping/Cancerversary – Piga Fernandez
October/November
Strategies to rapidly identify and validate new therapies for GIST/Life Fest 2014: An LRG tradition/A bold and important act: Glenita Mungcal’s legacy helps to fund GIST research/2014 Night to Fight Cancer is a win for all/GIST 101 webcast delivers the basics/PAWS-GIST cancer clinic opens in the United Kingdom/The LRG patient registry: powerful tool for patients, physicians and researchers/Giving Back: Annual “DeLo” barbecue benefts LRG/GIST educational webcast featuring Mo Collins/NIH Wildtype Clinic for 2015 Announced/Pfizer Releases New Dosage for Sutent Patients/Virtual roundtable about GIST with Jerry Call/GIST Sarcoma Life Raft Group Canada announces 3rd annual day of learning in Vancouver, BC/In loving memory of Louise Ladd, Life Raft Group member
June/July
Living with ostomy: One LRG member’s story/LRG Research Team members contribute to new research findings/Expert patient training program a success/LRG member Eileen Glasser creatively networks to support GIST Awareness Day/The faces of ‘We Are the Cure’ – Teena Petersohn/Alianza GIST meets in Zurich, Switzerland/New Horizons takes place in Zurich, Switzerland/NIH Clinic provides support and a healthy dose of fun/Poker for Hope proves to be huge success
April
Camp Kesem Provides a Week of Fun to Children of Cancer Patients/Complete Resection May Result in Long-Term Cancer Survival/LRG Appreciation Event Brings Together Local Supporters/Everything you need to Know about Life Insurance and Cancer/GDOL Miami Attracts Large Attendance This Year/Tissue Bank Update – Resistant Tissue is Scarce
February
Jim Mills Shares his Journey With GIST/Tamara Taggart: Cancer Cover Girl/GIST Research Campaign Q&A/2013 LRG Research Progress Report/Tanner Finds Chuckles in Cancer Treatment/New Staff Update
2013
December
New Treatments For GIST/Alianza GIST presents at ICCC5/Treatment of Small Stomach GISTS/Reasons Why GISTers are on No Treatment/Caregiver Support Group in Illinois/The LRG Attends CTOS/IRBs and the LRG Patient Registry/Kie Go turns Knowledge into Action
October
Access to Information, Health Equity and Access in Cancer Care/Check out our Annual Report
August
Is it Time to Cure GIST?/LRG at ASCO 2013/ASCO features many updates on GIST trials/An advocate’s rewarding experience at the NIH Clinic/What does Cancer Feel Like?/LRG Researchers publish ‘Cell Sleep” Study/Alianza GIST meeting to shape future/New Horizons makes a splash in Miami/Sosipatros Boikos takes helm at NIH Clinic/Graduating, Birth, Marriage – What Can’t GISTers Do?/Scott Russell takes the scenic route to fundraising/Chris Skiff defies odds by running in California Marathon/Swiss Meeting Mark’s Groups 10th Anniversary
June
ETV1 inhibitor takes lead in combination approach to clinical trials†/How “Next Generation” DNA sequencing is changing the landscape of GIST research and diagnosis/10 things you need to know about hospice/Clinical Trials and the Search for Greater Efficiency/New Blood Test Technology May Impact GIST Treatment
April
Research Team Meets In New Jersey/GIST Specialists give Support at Miami GDOL/Actress Mo Collilns uses humor in her battle with GIST/Stivarga becomes first FDA-approved third-line trreatment for GIST/Family Planning with GIST can be a hard Decision/How to Make the Most of the LRG Website/Pioneer Dan Vasella gave the gift of time/Distribution by State of U.S. GIST Patients in LRG Registry/LRG Advocates for Cancer Funding in New Jersey/Join our Tissue Bank – Help the LRG Find a Cure/Audit Report Gives Glimpse into Priorities
February
LRG Research Team Publish Results of Imatinib Study/Lon Garber’s Excellent Adventure/Patient’s Face Obstacles in Quest for Treatment/LRG makes their mark on 17th Annual CTOS meeting in Prague/LRG Research Team Holds Quarterly Meeting/LRG Launches New Website, App and Store/LRG Welcomes Deputy Director and Members/Annual Holiday Fundraiser Going Strong/Life Fest 2012 Big Hit in Vegas/Swiss GIST Group Awards 2012 Prize/Dave Safford Shares His List of Happiest Moments Since GIST
2012
Life Fest†Special Edition October
New developments seen in Pediatric-Like GIST/’Night to Fight Cancer’ event raises almost $90,000 total/Janeen’s tips for surviving caregiving/What court considered on Affordable Care Act/Masitinib, other trials presented at ASCO/LRG research team efforts compare well to a bigger and costlier project/New immunotherapy approach advances/Countdown to Election Day/Chicago chapter celebrates 10th anniversary/Michael Shorb, California poet
August
Identifying novel treatment options by defining molecular mechanisms/Viva Life Fest! Join us in Las Vegas/A Dutch youth’s global search for other patients with Carney’s Triad/Ten ways to fundraise for LRG/ASCO notes: A closer look at Regorafenib/Several clinical trials updated at ASCO/New gene panel takes mutation testing to a new level/NIH Clinic shares information on 3 trials/MSKCC opens new immunotherapy trial for GIST/Alianza GIST joins forces with Brazilian partner/What’s up, Doc? Social media and healthcare/Times series underscores LRG research team’s approach/Pfizer offering Sutent support program/New research supports role for crenolanib
June
GDOL draws big turnout in Florida/Cesarini wins 2012 Courage Award/Guidelines proposed for pediatric GIST/LRG Tissue Bank uncovers diagnosis issues in LatAm/Alianza GIST launches new website!/Alianza GISTís first webinar a success/Adieu, Adios, Ciao, Auf Wiedersehen, Shalom, Sayonara, Xaipete Tricia McAleer/New Horizons GIST: Patient Advocates meet in Paris/The LRG turns 10!/Ninth Swiss meeting covers uplifting topics/I found a friend in the LRG/Phase III Regorafenib trial meets primary endpoint/DC-area GISTers meet!
April
LRG mourns the loss of a great friend, Jeroen Pit/GDOL Update: Speakers announced/LRG Research Team meets in Leuven, Belgium: leaves with renewed energy & commitment to finding the cure for GIST/Meet our new Montana local rep: Dirk Niebaum/Cellular origin of GIST from the good cells perspective!/Alianza GIST meets in Miami/And they’re off! 1st Harness a Cure is a success/NJ GIST gathering serves up support & smoothies/New report finds most hospital errors go unreported/Thomas G. Overley, 1952-2012: Toledo lawyer played guitar, sang in group/Durham lived life with passion and pride/Arizona GISTers meet!/Spunky Texan fought GIST bravely
February
2011 Executive Director’s Report/Genetic markers of progression in GISTs and their significance/GIST warriors left behind a legacy of struggle & triumph/One Life Rafter chooses a unique way to show support/Congrats to BOD member Marietta Robinson on Obama nomination!/LRG introduces GIST Day of Learning in Miami/OCT-1 study shows promise for some CML patients: could there be benefit for GIST?/Thank you for your support!/GISTers daughter holds third annual ball for GIST/Retired horse trainer seeks to Harness a Cure through Dover Downs fundraiser/Swiss pathologist wins the 2011 GIST prize
2011
December
CTOS wrap-up: LRG among key presenters/GISTerís legacy launches new support program/Alianza GIST update: CME & access discussed/Swiss GIST groupís film wins silver Edi in Zurich!/Deck the halls with boughs of jewelry!/Texas GISTers meet!/Pfizer to open clinical trial for young patients with GIST/DeLorenzo makes it to the finish line with a little help/Please help the LRG keep hope alive/LRG Canada holds third general meeting in Vancouver/One of our first, one of our best: Dan Cunningham passes away/New Jersey GISTers meet/Beloved family man, Vietnam vet & ‘Redcatcher’ passes at 68
October
Aloha, our dearest friend, Richard Palmer/TDM extends BLT deadline: LRG urges GISTers to take advantage/LRG to make its mark on CTOS/Eighth Annual LRG Poker Tourney raises over $110K!/LRG launches mutational & plasma level testing survey project/Pediatric GISTer will test his mettle in Marine Corps Marathon/Social Securitys Compassionate Allowances explained/Dutch GISTers share laughter, tears & hugs/Sign our petition: Safe medicines save lives!/Please welcome new Texas rep, Dee Hawkins!/Join us in welcoming LRGs new SoCal Representative/Gangstead was 61/Argentina GIST org is official!/Zuber remembered as loving wife, mother & grandmother
August
Adjuvant Gleevec star of ASCO: What we learned/First GIST tumor board convenes for Latin American docs/Dutch Group marks one year anniversary of D-Day fundraising in Amsterdam/Case Study: challenges of long-term therapy in GIST/Trips & transitions: Where our specialists landed/Furthering research through the NIH Pediatric GIST clinic
June
Mutational testing & survival: where we stand/Alianza GIST meets for second time in Brazil/A spotlight on Dr. Linyee Shum/State of the GIST Community Part 3: What do we know about mutational testing?/Healthcare 2011 and beyond: Part 3/Swiss are back at it with 8th annual meeting/GIST, my friend: How to live with this chronic disease day-to-day/Steve Da Yooper Bashaw passes peacefully at 59/Science & Surprises abound at NJ GISTers meeting!/Chicago-area GISTers meet!
April
Breaking News update: TDM renews plasma testing/Wildtype GIST & SDH: what to know/Dating with GIST: who, what, when, and just plain how? (Part 2)/Behind the walls of Brigham & Women’s: Fletcher’s lab/April 2011 clinical trials update/Healthcare 2011 and beyond: Part 2State of the GIST Community Part 2: What do we know about your diagnosis?/Saffords Valentines concert brings in over 15K/Welcome to Janeen Ryan!/Holiday Fundraising campaign raises over 53K!/Italian GISTers hold 4th national meeting/Tate was beloved mother, grandmother, artist and friend/FDA too rigid in review of drugs for critically ill/MD Anderson and Memorial Sloan-Kettering among top cancer centers in US News & World Reports best list/LIVESTRONG Cancer Navigation Center opens in Austin
February
2010 Executive Director’s Report/D842V gets its moment in the spotlight/Dating with GIST: who, what, when, and just plain how?/Healthcare 2011 and Beyond: Did the donut hole get a little smaller?/February 2011 clinical trials update/Masitinib Phase II Trial Reports Benefit in New GISTs/Fight or flight: A chance encounter in the sky compels one GISTer to do her part/Latin American GIST Coalition, new challenges on the horizon for 2010/NORD Hosts Forum for FDA Commissioner and Patient Leaders/6th NIH GIST clinic once again successful/State of the GIST community: Life Raft Groups patient registry demographics /Michigan GISTers meet!/Banks passes at 63/David J. Brandis-In Loving Memory/Man of God, musician, proud father and husband, McCormick will be missed
2010
December
Cards, chips and laughter abound at 7th Annual LRG Poker Tournament/Itís your life, shouldnt it stay in your hands?/The giving has begun: LRGs annual holiday campaign is off to a great start/Colombians gather for first time as a formal organization/Impressive 7th meeting of the Swiss GIST group/Safford brings together champagne, strawberries and a concert pianist for unforgettable Valentines fundraiser/No guilt for charitable giving through Give and Goodshop/Congratulations to LRG member Kim Trout!/Congratulations Dr. Su Kim!/Only one phrase could suit him, Hepner was one hell of a guy/Teacher, coach, husband, father and friend, Buchanan did it all/FDA official wants to prosecute pharma execs/EU Cancer Patients Concerns Heard: Cancer Patient Mobility Moves Closer to a Reality/Colorado GISTers meet!/Beloved mother, Hampson passes away at age 61/Michigan GISTers meet up!/Introducing…Alianza GIST!/Have you ever thought about what your cancer looks like?
October
D Day expidites GIST research: the story of one Dutch GISTer/Project D Day: our greatest hope for a cure/Breaking GIST News: Novartis suspends plasma testing support/Norman & Anita meet with Dutch GISTers in Amsterdam/Antioxidants: useful supplements or should we refrain?/Vettel reports on ASCO 2010 updates/Varmus sworn in as NCI’s 14th director/Cancer tattoos mark milestones but know the risks/’Tis the season for holiday giving/Eighth annual patient summit for CML & GIST held in Austria/LRG welcomes David Safford to board of directors/Arluck passes away surrounded by family/A life well spent, Offen passes at 72/The Seventh Annual LRG Poker Tournament!/Prosecutor, Dean, husband and friend, Robinson was respected by all
April
LRG meets in Mexico!/Advocates unite to help struggling patients in Macedonia/Life Fest: Clinician of the Year winner and Tree of Life project/Researchers collaborate at Monterrey meeting/Latin American GIST Coalition promotes Monterrey Declaration/Updates from GI ASCO 2010/GIST-Switzerland Group founded for the support of GIST patients/Over 100 attend 3rd national Italian GIST meeting/Poss meets her mark…and then some!/Be prepared when traveling with cancer/Young GISTers cross country lines to get together/Brave GIST fighter and dedicated wife and mother passes/Vietnam vet, Olympic torch-carrier and proud dad passes at age 61
February
2009 Executive Director’s Report/Bench to bedside and back again/More Life Fest 2010 updates!/Itís time to consider mutational status for resistant GIST patients: KIT exons 9 & 11/February 2010 clinical trials update/Tasigna shows greater efficacy over Gleevec for CML: Will GIST be next?/Magic Cancer Bullet: Behind the scenes/Synta opens phase II trial STA-9090 in GIST/Insomnia is common, likely under-diagnosed among people with cancer undergoing chemo/NIH Pediatric & Wildtype clinic continues with success/Southern California GISTers meet!/Chicago-area GISTers meet!
2009
December
IGF-1R: A novel GIST therapeutic target/Vettel lives life with her future in mind/LRG launches Latin American GIST initiative/More highlights from Life Fest 2010, plus how you can pick Clinician of the Year!/CTOS 2009 Reports: Adult & Pediatric GIST/Big surprises and bigger hearts prevailed at this years annual NYC poker tournament/LRG uses registry & GISTory to help patients in a new way/A spotlight on trials for adjuvant GIST/December 2009 clinical trials update/What does a cure mean for you?/Rhode Island GISTers meet!/Pennsylvania GISTers meet!/Hague runs with friendship in her heart/Supporters ëShow The Loveí for Texas Marathoner/Chuyko passes with love at her side/Hamilton lived his life serving others/LRG in the News: Poster & Abstracts, oh my!/Cross-continental fun at the LRG office!
October
Defining molecular mechanisms of imatinib treatment in GIST/Jerry Call: the man behind the scene/LifeFest 2010: Celebrating a decade of life/Itís time to consider mutational status for resistant GIST patients: PDGFRA Mutations/REGISTER Study Open in Australia, New Zealand and South Korea/Chicago-area GISTers meet!/Rowan passes with family by his side/Nurit Mantz, wonderful wife and mother, passes away at 46
September Clinical Trials Bulletin
Smarter Cancer Research: Finding a better way to survival.
August Clinical Trials Bulletin
The patient’s dilemma: Where should I donate my tissue?/Researcher update in Pediatric GIST/Impressive turnout for sixth annual Swiss GIST patient group meeting/Blay appointed new EORTC president/Jacqui Bomberg – In Memoriam/GIST & CML patient reps from all over the world meet in Lisbon for Patient Summit/Drug Prices Influencing Doctorís DecisionsBecker fought bravely for 12 years/Kitty Katt Kimbell passes away at 60/Renate Croll , 65, loved the beach
July Clinical Trials Bulletin
ASCO 2009: Sorafenib fourth-line treatment in imatinib-, sunitinib-, and nilotinib-resistant metastatic GIST/ASCO 2009: In vitro activity of sorafenib against imatinib- and sunitinib-resistant kinase mutations/ASCO 2009: Phase I evaluation of SF1126, a vascular targeted PI3K inhibitor, administered twice weekly IV
June Clinical Trials Bulletin
Interstitial cells of Cajal: What are they and why should you care?/Israel’s leap from support group to proactive non-profit/NIH announces new program to develop therapeutics for rare and neglected diseases/LRG announces GIST Collaborative Tissue Bank initiative
May Clinical Trials Bulletin
HSP90 inhibitors and GIST: why this target could work/As the days spring forward, Bannon reflects on her life/Tips from the Raft: A GIST vet passes on her secrets/U.S. News announces Best Hospital rankings/Kemp was faithful volunteer & vet/Mirenda, man of the outdoors, passes away at 68
April Clinical Trials Bulletin
GIST diagnosis: the pathologist’s perspective/LRG Research Team holds second in-person meeting: new tissue banking initiative born/Community hospitals vs. cancer centers: should the patient be informed of the risks?/Reprint: Life Raft members share medical solutions/Janz, 65, left behind a devoted family/Schnorf fully enjoyed life in spite of GIST
March
New developments in gene expression profiling/Better monitoring for Sutent-related heart problems may be warranted/Eleven year-old battles GIST with brave face for six years/Cancer in the news: CMS broadens PET scan coverage, President Obama calls out cancer/Gowdy played many roles: nurse, quilter, volunteer, wife and friend/Family and home were Hepplers first loves, gardening and cooking were her passions
February
2008 Executive Director’s Report/More front-line trials for GIST may help prevent resistance/2nd French national GIST conference a smashing success/New LRG clinical trials database explained/KIT signaling & new approaches for GIST therapy/Pat George: the man, the myth, the legend/LRG stance on placebo highlighted in Cancer World/Benninger was 58/Inlander was 64
January
Hereditary GIST explained/Plasma level testing: what we know, what we don’t & what we hope to learn/FDA approves Gleevec to prevent recurrence of GIST/Treatment strategies & mutational testing among key topics at CTOS 2008/January 2009 international clinical trials/Twenty year battle brings feelings of luck and determination to Presnall/A man inspired, a family remembers/Ferris brought joy to everyone she touched/Gjertson was 60/Wilhelm shined as man and mentor
2008
December
The challenge of imatinib resistance in GIST/On the road with the LRG/Sorg sails through stormy GIST journey/No longer content to sit on the sidelines
November
Life Fest ’08 a sucess!/treatments for D842V mutations/Kreutz lives and works with cancer/Pediatric GISTer tells it like it is/Paulsen, 57/Mayer’s art on ‘Oncology on Canvas’ tour/Sharla Ellingham, wife, mother, grandmother, passes at 76
October
A message from the Executive Director
September
Editorial: When is enough, enough?/Routine mutational plasma level testing: The time has come/MSK team finds rare new mutation/How long must dying patients wait for justice?/Gleevec reduces FDA priority review as first therapy to reduce recurrence of GI stromal tumors after surgery/Keeley Bihr: Remembering a mountain man/Fight ends with family by her side/Family, history and cars made it a colorful life for Jan-Einar/Devoted wife, mother and volunteer passes
August
Placebo: Wrong then, wrong now/NIH clinic: in two perspectives/Infinity’s IPI-504 enters phase III/PFS: Patient Benefit or Lower Standard?/Schade offered a warm smile and a love of life
July
Potential new signal pathway in GIST/Infinity’s IPI-504 completes phase I/Joseph Trinca, 58, passes away with family at his side
June
New target found for wild-type and pediatric GIST/Canadian GIST patients may soon benefit from Josephy’s experience/The role of CT and PET scans in the evaluation of GIST
May
Interpreting research: dilemmas facing patients and physicians/Medicare: What some GISTers need to know/PI3Ks: a new target in GIST and new drugs in trials/MRIs, CTs and PETs examined and clarified
April
Call dissects 2007 LRG study/The doctor is in: common patient questions answered/Concerns Raised, FDA meets on ESA’s/Chandell Fuqua – Member Story/Gerald Snodgrass – In Memoriam
February
Suboptimal response in CML linked to Gleevec uptake into leukemia cells /GI symposium offers interesting abstracts
January
Molecular therapy & surgery combined in GIST/Laura sees pot o’ gold, even if no one else can /Mustard was friend until very end.
2007
December
CT scan overuse can lead to problems/Apoptosis: How to kill a GIST cell/Michelle Scheiperpter – In Memoriam
November
Compassionate use process is not so compassionate/Looking for new ways to fight GIST/New views of receptor molecule may open doors
October
Building blocks of tumor progression/Two reports of good Nexavar response
September
Rigg: The healthiest woman, despite GIST/Pediatric GIST: an evolving concept/NCCN task force takes strong stand in genotyping debate/Pete Richetti, 47, beloved son, cherished brother and dedicated uncle
August
Will you run for my daughter?/Katharine Kimball faces GIST one surgery at a time
July
First LRG webcast is successful/Looking for kinase mutations in GISTs: how, when and why?/A stitch in time: life with GIST can still exist/Highlights from ASCO 2007/Once a teacher, always a teacher/Community Beat: Relay for Life and Lecointe official picture/July 2007 clinical trial update/LRG in the News: Wall Street Journal article/Florida GISTers meet/Local Groups Get Together: Southern California & Michigan.
May
KIT & PDGFRA mutations in GIST: A to Z/Clinical trial confirms Gleevec reduces recurrence/Immunotherapy trial strives to improve Gleevec response/Adjuvant Gleevec Q&A with Jonathan Trent and Jerry Call/From the Elysee to Le Monde, Lecointe can do it all/’Treatments, trials and trails, oh my’ but life must go on: Part 2/May 2007 clinical trial update/AMN107 (Tasigna) now open at Fox Chase Cancer Center/Editor’s Note: Dr. Daruka Mahadevan/Biomarkers presentation sparks interest at Dutch meeting/Ohio local group meets.
April
Gene microarray technology yields interesting results in the laboratory/Scherzer Editorial: companies need patent protection to help with future drug research/’Treatments, trials and trails, oh my’ but life must go on: Part 1/April 2007 clinical trial update/Fourth annual spring meeting of Swiss GIST patient group/Novel KIT inhibitor also targets a new suspect clinical trials to begin this year/Clinical Trial Table/LRG works with medical institutions on Familial GIST study/Simple two-gene test sorts out similar gastrointestinal cancers/Dutch LRG changes name and plans 2007 GIST meeting/John Leary, a wonderful father, husband, friend and student/Pediatric GIST is discussed at San Diego meeting/Israeli group holds its fifth monthly meeting.
March
The use of mouse models to help investigate GIST/Immunotherapy: a new hope for GIST treatment/Gleevec: revolutionizing GIST cancer treatment/March 2007 clinical trial update/Life Rafters raise $30,000 with third annual holiday campaign/Illustrating gives Greenwood comfort through his GIST battle/The Life Raft Group Facebook/Gratz, 64, fought a courageous battle/LRG Science Team meets in Chicago/Clinical Trial Tables.
February
Several new Web sites launched about GIST/Understanding GIST survival under imatinib treatment/Strategies and classes of potential GIST drugs/Painting transformed Mayer’s pain into healing/Norwegian FAQs up on Web sites!/February 2007 clinical trial update.
January
Overcoming treatment resistance in GIST patients/The state of the Life Raft Group in 2006/Questions to consider for adjuvant treatment/Finding a silver-lining when living with cancer/Magic Leaves Fundraising Campaign/CancerCare Teleconference/Howe fought GIST courageously/Lee Cousins, age 58/January 2007 clinical trial update/Georgia Life Raft Group/Tran, 39, traveled across the world to find a cure for GIST/Hospital tips: the small stuff can add up.
2006
December
European conferences attract GIST medical professionals/Call comments on phase III Sutent results/LRG Netherlands successfully hosts third annual meeting/Alabama LRG group meets for first time in Birmingham/Life Raft awards next round of research grants/Holiday Fundraising Campaign/Quilt auction brings Life Raft Group over $300/Rita Raj was an active women’s health advocate/December 2006 clinical trial update/Novartis meets in Monterrey, Mexico to jump start clinical trials/New Jersey Local Life Raft Group/First pediatric GISTer to tie the knot!/Flu Shots/Ohio Group meets with Dr. Manisha Shah of Ohio State University Medical Center/Chicago brings speakers to discuss GIST treatment options.
November
Life Fest: A Texas-sized success/Connecting the Dots: Call offers perspective on GIST trends/Researchers give update on GIST Resistance Project/Over $85,000 raised at New York City poker tournament/Betty Louise Rosenbluth–Celebrating 75 Years (1930-2006)/Relay for Life for Japanese GIST Patients/Holiday Fundraising Campaign/November 2006 clinical trial update/New websites launched for Italy and France LRG Groups/Coppede was an avid golfer and gardener/GIST Walk in memory of Peter Thomas/LRG member John Leary raises money for GIST research.
October
A message from the Executive Director/Coming Attractions/Five-Year-and-More GIST Survivors.
September
GIST patients and experts head to Dallas for Life Fest/Israeli GIST Group brings CIST clinical trial to Israel/Walking the GIST Trail again/GIST studies receive substantial interest at ASCO ’06 conference/Corless: mountain climber during ‘off’ and ‘on’ peak time/Cancer patient credits experiments for survival/Tap helps start sarcoma program at UCLA/Correction on AMG706 GIST trial article/New website launched for Global GIST Network/September 2006 clinical trial update.
August
Life Fest 2006 agenda now available/More placebo clinical trials predicted for cancer patients/Life Raft Group reexamines the role of drug level testing/Surgery and genotyping highlighted at ASCO conference/AMG 706 will not get FDA approval for GIST/Case scenario of patient treatment adherence/Opinion on surgery for metastatic GIST/The first pediatric GIST review board: creating a virtual center of excellence/Gleevec still beneficial, despite evidence of heart disease/Pastor Paul Isaak lived his life for everyone/Washington Life Raft Group/GIST patient groups convene in Budapest/New website launched for Global GIST Network.
July
Life Raft meets with Centers for Disease Control and Prevention/Mutational testing predicts GIST treatment response/Novartis-Schering drug vatalanib produces interesting early results/Debiec-Rychter sees research group as an orchestra/Medicare Surprise: Why many seniors could temporarily lose drug coverage/Editorial: The time for routine mutational testing has come/Life Raft meets with Infinity about IPI-504/Murphy battled GIST for 7 years/AMG706 continues testing as second line drug for Gleevec-resistant GIST patients/Life Fest 2006 in Dallas, TX September 15-17, 2006/Dutch Life Raft Group receives national recognition/ASCO reports Sutent as important drug for pediatric GIST/Global GIST adds new GIST representatives/The benefits of Health Savings Accounts.
June
Clinical trial initiative to be launched in Mexico/EORTC Study: Progression-free survival improves for 800 mg vs. 400 mg patients/Learn how to appeal an insurance claim/Vasella, CEO of Novartis, will appear at Life Fest 2006/A continued discussion on optimizing therapy for GIST/Palmer bids adieu as Life Raft newsletter editor/Life Raft publishes 2005 annual report/Laughter helps sisters battle the GIST dragon/Global GIST Network adds new representatives/Roy Barton, 69, battled GIST for five years/June 2006 clinical trial update for GIST patients/Highlights from the American Association for Cancer Research meeting/Thoughts from the Executive Director/Largest West Coast gathering of GIST’ers/Chicago Life Raft chapter focuses on ‘positive thinking’.
May
Membership meeting will include Pediatric GISTers/Reflections on lessons learned from First Pediatric Weekend/Understanding pediatric GIST may provide important clues/Antonescu helps break ground on pediatric GIST/A wedding in the Life Raft Group/Stephanie Kastner shares her trip to the Western Caribbean/What Cancer Cannot Do/We all have different ways of coping with having cancer v Living life to the fullest/May 2006 clinical trial update for GIST patients.
March – April
Life Raft funds 10 research projects/Dallas hosts Life Fest ’06 Sept. 15-17/Maybe There Is A Better Way/March clinical trial update for resistant GIST/PedsChat, the first pediatric GIST listserv/Mansfields look to the future despite worries/Optimizing therapy for GIST: A discussion/Imatinib resistance focus of intense study/The LRG Research Team/Maj. Quigley fought GIST 9 years/Pediatric GIST Newsletter plans launch this spring/Patient status after four years on Gleevec/Global GIST Network adds New Ireland representative/Locks of Love/Help keep the Life Raft afloat!/Deep in the heart of Texas.
February
Standard treatment guidelines for GIST/GIST’ers share their Sutent experiences/Life Raft coming attractions/Explosion of GIST information raises questions/Setting 2006 goals at LRG headquarters/GIST Q&A with Dr. Peter Reichardt/GIST gathering in London/Allan Tobes–A celebration of life/A roundup of clinical trials/Global GIST Network adds new representatives/Russ South was 67/Appealing Medicare’s Gleevec quantity limits Award named in memory of Nancy Ann Hughes Welsh.
January
Sutent given U.S. approval/Challenges ahead for the GIST community/Infinity launches trial of IPI-504 vs. GIST/Fight GIST and follow your dream/GIST 101: Cell division and cancer/Navigating Medicare Prescription Drug Plan D/Battling fatigue after the holidays/GIST Resistance strategic plan completed.
2005
December
GIST and Gleevec: 5 years of progress/Brian Rubin: snowboarder to dedicated pathologist/Prescription health coverage: A tale of different doughnuts/The youngest Life Rafter shares her advice about coping with cancer/Cordelia Salas, devoted wife and mother/Second national contact day for the Life Raft Group Nederlands/Clinical trial updates as of December 2005.
November
A leader in the battle to defeat GIST/Resistant GIST may fall to new inhibitor/Sile Bao: Growing up with GIST/Kids with cancer take the stage at ArtWorks 2005/Second poker tournament brings in $61,000 for LRG/Pamphlet on pediatric GIST goes to school/An overview of CTOS 2005/ATTENTION: Medicare-eligible Gleevec patients/Online Q&A from the Life Raft Group/Thanksgiving Campaign.
September – October
First strategic plan to address treatment resistance started/Meet the LRG Community/Launching the Global GIST Network/Life Raft members share medical solutions/German GIST group new plan of action/Daniel Wieland was a farmer, dairyman/Walk for Cure another success/Dr. Lewis Thorp will be remembered/LRG Coming Attractions/LRG Thanksgiving Campaign To Match Challenge Grant/Roberta Gibson was LRG’s first accountant/Patricia H. Novicki was 77/Flu Shots/Clinical trials target resistant GIST
July – August
AMN107+Gleevec clinical trial opens Testing will be on just 35 patients at six sites, two of them in the U.S./FDA fast-tracks approval process for Sutent/Overcoming resistance is groupís goal Strategic planning group formed, many of the top GIST researchers sign on/GISTíers strike just the right note These three Life Rafters discover healing power, spiritual release in music/New insights to multi-drug resistance/Life Rafter has sky-high plans/Michigan Rafters take to the water/Patient groups gather in Ireland/Big turnout at Chicago area meeting/First Gleevec class marks 5th anniversary/Life Raft board meets in Chicago/Register online for GIST research fundís Oct. 2 Walk for a Cure/Questions and answers from our members/Henry Lange Jr., farmer, veteran, outdoorsman, was 69/Terri Stevens, restaurateur and 15-year GIST survivor/Daniel Raymond Hoffman, 58, was a decorated veteran
June
$2 million pledged for GIST research: Life Raft will use grant from Novartis to focus on resistant tumors/Young GIST patients find unity, hope Families find strength in numbers, form bonds at pediatric GIST gathering Advances reported at 2005 ASCO meeting/Sutent appears headed for approval/AMG706 active vs. solid tumors/PKC412+Gleevec: stability for some/Carol Donnellís gift: Seeing potential in others/Jim Boucher was the favorite teacher of many/Rob Danielson, 54, survived 12 years
April-May
Ignorance is bliss, but not about GIST/Beyond Gleevec: The next-era drugs for GIST/Pediatric GIST family gathering near/Progress against GIST inches ahead/Medical mistakes happen, sometimes in a big way/Life Rafters gather in Southern California/Maher Samet of Tunisia, good friend and father/Alan Fink, 45, loved riding, family and friends./Life Raft Group directors accept challenge grant/Nancy Welsh, 37, survived GIST for more than 14 years/Battle with GIST brought Avraham Anidjar to the U.S./In Brief: Gleevec + KRX-0401, AMN107, RAD, Calendar Gleevec, vitamin C and insulin slows disease/What does love mean?
March
Many drugs coming for Gleevec-resistant GIST/She knew all was not right but diagnosis took 5 years Joan Marie Hayno has been NED thanks to surgery and Gleevec/Life Rafters meet in Amsterdam, Prague/PKC412 fights Gleevec-resistant GIST/Plans laid for global GIST network/Life Raft joins European Cancer Patient Coalition/Druker updates stem cell research/Life Raft Group calendar of coming events/GCRF presents first $25,000 gift/Can you name that country?/Toledo Daze/Barry Cushing, distinguished professor, was 59/Chicago area Life Rafters meet at Wellness Place
February
SU11248 works, trial ends 7 months early/†Fifty-one weeks from diagnosis to remission Gleevec, surgery, family, friends, and prayer key to a new lease on life/Pediatric GIST families to meet in New York/Why SU11248 works when Gleevec fails/Leukemia researchers strive for a cure/Gastric GIST behaves better than expected/Arizona group meets despite record rainfall/Rudi Holzapfel, Irish poet, battled 3Ω years
January
Editorial: Time on fire Dying patients canít get new drugs that could save their lives/Study: Gleevec levels decrease over time/Life Raft board of directors adds 12th member/Rafi Aghababaian, 38, fought GIST for two years/Fletcher gives Axelrad lecture at CTOS/Fletcher tells Life Rafters of new type of trial/Pediatric GIST families mobilize U.S. agency puts AMG 706 on fast track
2004
November – December
Life Raft study presented at CTOS annual meeting: Staring vs. actual dose significant/Fundraising charges on: GIST Walk tops $90,000 for GIST research, Team LRG Completes New York City Marathon, Poker Tournament nets over $47,000 for Life Raft,/Life Raft Group Second Annual Fundraising Drive Off to Good Start/Putting Gleevec Tablets in Glycerin Capsules Raises Serious Concerns/Life Raft Research Team meets with European Researchers/Life Raft Hosts First Pediatric GIST Conference/Novartis Scientists Review Status of Drugs in Pipeline/Chicago LRG Takes On Fundraising Role/Life Raft in Warsaw for Patient Advocacy Conference/Life Raft Group at CTOS 2004 Montreal, Canada/A Review of the Posters and Papers at CTOS/Das Lebenshaus Visits the Life Raft Group Office
October
Life Raft study presented at Life Raft launches annual fund-raiser,/Money needed to fund education, advocacy, research, initiatives/On board! Meet Silvia Steinhilber, Canada resident, native of Germany, newlywed!/Novartis to help patients on Medicare Novartis will work with new drug coverage to ensure Gleevec supply/Dozens attend first national gathering of Dutch Life Raft/GIST mutation top cause Gleevec failure/Pamela Bowden was a dancer, figure skater/John Mabee is survived by his wife of 18 years, four children/Michigan area Life Rafters hear “GIST 101″/A survival paradigm for GIST/Thank you from China/Life Rafter members find solution to Gleevec tablet nausea.
September
Life Raft study presented at Glivec at higher doses combats progression Largest study of GIST finds 800 mg. keeps cancer at bay longer/Running for the Life Raft GIST survivor, friend to join New York marathon and help battle cancer/Fourth ëWalk for a Cureí happens Sunday in New YorkEuropean study confirms LRG findings on relapse/192-mile bike ride = 1 luminometer/Life Raft Group Board of Directors will add five members come January Bernie Kaplan survived by wife, 2 sons, 2 daughters.
August
Nobel winner accepts Life Raft Group award – Watsonís co discovery of the structure of DNA provided the foundation for targeted cancer treatment./When the patient is a doctor Dr. Arnold Kwart learns what life is like on the other side of the desk/UK prepares to OK Glivec for GIST/Her dadís story: Thriving on lifeís lemons/Pam Barckett knows orphan disease/Worldwide GIST Calendar/Hayami-san faced GIST with ëganbatteí/More study needed to determine optimal Gleevec dose/September Newsletter Coming Attractions/AMGEN launches phase ll clinical-No placebo/Dutch Life Rafters plan national gathering/Carol Berres persisted in lifeís journey
July
Hoping for a miracle, preparing for death Michael Matthews fought to survive the time gap between clinical trials/New drug holds promise for GISTís sister cancer/School aids teenís fight vs. GIST/Medicare lottery to cover Gleevec, for some/Error reported adjuvant Gleevec trial/Dr. Larry Baker addresses Michigan chapter/Update on new drugs with GIST potential/Chicago LRG chapter learns of Amgen trial/Life Raft T-shirts, pins now available/Life Raft is getting the word out about GIST/You can bet legislators will never play the Medicare lottery/GISTíers join for artist Ellen Mayerís solo exhibition in NYC/Lupe Zertuche battled GIST four years.
June
Cancer experts on GIST Gleevec dosage level is still unresolved at the 40th annual ASCO meet/GIST patients meet around the world/What dose Gleevec is best?/EDITORIAL† – A wish list for keeping GIST patients alive/Pathologists predict behavior of GIST/$50,000 awarded to GIST researchers/L.A. area GIST patients meet July 11.
May
GIST patients, experts meet at Life Fest 2004/Back from the brink When Gleevec fails and options narrow, stress brings on depression/Vasella awarded Stratton Prize/Life Raft aids GIST dads worldwide/Texas area chapter of the Life Raft meets Saturday, June 12/Pathologists share their data on GIST/Darlene Vaughan was an early Gleevec success story/Fourth annual Walk for a Cure set Oct. 10 in Congers, N.Y./Sid Locker, 76, was WWII veteran, student counselor/Life Raft directors focus on resistance at Orlando meeting.
April
Meet the top GIST experts at Life Fest/AACR reports on drugs with GIST possibilities/Higher doses of Gleevec work best for CML/Life Rafters meet in San Jose, Costa Rica/Tentative agenda for Life Fest 2004/The best part of surgery/In Memoriam: Curtis Berry, 42, fought GIST three years/Arthur ëADí Rhea involved with his community.
March
Placebo raises stress level of GIST patients/Final plans under way for Florida ëLife Fest.í/Another resource for Chicago area patients/Pediatric GIST collaboration advances/Donít beat cancer ó outrun it/Chicago chapter holds its sixth meeting/In Memoriam: Dean Gordanierís talents knew no borders/Gust Vasiliades, 38, loved art, music and life/Carolyn Lenkszus battled GIST 11 years/Wife, two daughters survive Jerry Sidfrid.
February
Gleevec vs. GIST trial at 3 years/Test to predict Gleevec response expands/Texas area gathering draws 30 Life Rafters/Artist, musician, filmmaker Donald Kew was 43/Roy, Margolis team to improve LRG Web site/Few of our issues are theoretical/Membership Meeting/Outreach to Hungary/Medicare reform struggles on/PKC412 trial update/Loyola utilizes team approach to GIST.
January
Editorial Placebo use in Pfizer trial simply wrong/U.S., Germany launch ëGleevec comboí trial/Little progress with Pfizer over placebo issue/Texas-area meeting planned Feb. 7 in Dallas/Tuomas Hemminki, 41, fought GIST three years/SU11248 clinical trials are beginning/Chicagoís Evanston aims for excellence/Pictures Dr.s Reichardt and Blanke/At the Jan. 15 meeting with Novartis, the Life Raft Groupís Jerry Call, center, is pictured with Dr. Bin Peng, Ph.D., senior clinical lead pharmacokineticist, and Barbara Kennedy, executive director/Oncology Scientific Operations/Tuomas Hemminki shows off his nice catch last July while at the family cottage at Lake Inari.
2003
November – December
Placebo use in Pfizer trial raises fears/Running for dad, and GIST patients worldwide/Life Raft, Sloan-Kettering to battle pediatric GIST/Poss, Byrne, Book named to board of directors/Lowering dose not advised/Swiss representative has busy fall/New York Life Rafters meet at Gildaís Club/Brockstein speaks of Chicago area group Pictures: Partners against pediatric GIST/Lisa Roth,† and sister Lorie Roth Cudzil are seen near the finish line of the Philadelphia Marathon/Pfizer and Life Raft Group members at the meeting at Pfizer headquarters/Tom Overley and Norman Scherzer arrive Nov. 11 at Pfizerís corporate headquarters in NewYork City./Pictured at the entrance to in the Life Raft Group office in Wayne, N.J. John Poss, Norm Scherzer, Anita Scherzer, Bob Book, Stan Bunn, Dr. Arnold Kwart, Bernie Kaplan, Dean Gordanier and Allan Tobes./Jerry and Lorie Cudzil Ulrich Schnorff.
October
Chicago area patients seek a ‘center of excellence’/Progress on fund-raising and many other fronts/Rain can’t dampen record ‘Walk for a Cure’/Phase III trial of SU11248: Some questions and concerns/The doctor had good news and bad news: Bonnie Girard/Frank Weigand, 66, fought GIST 13 years/Pictures: Tania Stutman and her grandchildren and friends at the Walk Life Raft Lunch: Tricia McAleer, Norman Scherzer, Pam Barckett, Steve Rigg, Jim Roy, Bernie Kaplan/Robert Stutman at the Walk/Bonnie and Mike Girard Bonnie Girard and grandchildren/Frank and Ruth Weigand
September
Symposium to focus solely on GI cancer/Dear Diary: To the brink and back/Fund-raising drive planned for Thanksgiving/First visitors to new Life Raft office are Californians/Life Raft Group’s ‘legal team’ meets in Boston/Southern California Life Rafters gather/Loyola doctors focus on STAT3 signaling/GIST’ers strike rich friendship at The Nugget/Walk for a Cure slated Oct. 19 in New York/Patricia Ford, 48, was a teacher’s aide in Polo, III/Maryann Klein, 56, participated in 3 clinical trials/Memorial gifts benefit the Life Raft/Pictures: LRG committee meeting in Detroit/Ilkka Ovaska and daughter Sirpa/First visitors at new LRG office/Southern California Life Rafters/Fund-raising committee, GIST’ers at The Nugget restaurant in California/Patricia Ford
August
Sugen offers option when Gleevec fails/GIST patients see new clinical trials/Directory of GIST experts in formation/Life Rafters hold New Jersey luau/Global sales of Gleevec up 102% in first half of ’03/Canadian Life Rafters gather at Jordan Station/Life Raft on the move!/Friends, family mourn Laura Blanchette, 47/Cancer boring? Andrea Fuller knows just what will get the juices flowing/Pictures: Andrea Fuller/New York Area BBQ/Canadian Life Rafters
July
Glivec OK’d for GIST in Japan, Israel/Targets, targeted therapy reports abound at AARC/Life Raft reach spans the globe/Dutch Life Rafters gather in Ridderkerk/LifeLine Pilots: The shortest distance between home and hope/Life Raft Events Going global: Each country has a unique bureaucracy/William Lawson, 56, a lifelong resident of Lafayette/Pictures: Dutch Life Raft Chapter/David Josephy/LRG Dallas BOD Meeting
June
Life Raft at ASCO/Sugen drug an option if Gleevec fails/Studies differ over 400 mg. vs. 800 mg./Gleevec tablets just as good as capsules/Life Raft raises research questions (editorial)/Study: GIST can outwit Gleevec four ways/Test reveals who’ll respond to Gleevec/Story of Gleevec told in “Magic Cancer Bullet”/Pictures: LRG Volunteers at ASCO/Dr. Michael Heinrich/Norman & Anita Scherzer with Dan Vasella
May
The Life Raft travels to Switzerland/New drug outwits Gleevec resistance/OHSU rolls out red carpet for GIST’ers/Chicago area group gears up for ASCO/Pictures: LRG members at OHSU/Dr. Heinrick of OHSU/LRG Executive Director Norman Scherzer and Dr. Dan Vasella, CEO of Novartis/LRG/members in Switzerland/The Salas Family in Cancun
April
Relapse survey/John Weir’s story/Cancer legislation needs support/Pictures: John Weir/LRG members at Novartis John Weir ID/LRG members in NJ/relapse data (table)/Kathy and John Weir/John Weir Day May 7
March
Protein defect linked to GIST/Sarah’s rants and raves/Access to Cancer Therapies Act/Stephen Larsen’s letter on GIST research needs/LRG launches relapse survey/Pictures: Bob Buch/Sarah and Bob Buch/Kerrie, Stephen, and William-Grant Larsen/Dr. Michael Heinrich/Marina and Keith Symcox/Representative Pryce Sarah and Bob Buch in Alaska/Michael and Mia Byrne fund raising in costume/Mehreen Hai letter
February
Protein defect linked to GIST/Sarah’s rants and raves/Access to Cancer Therapies Act/Stephen Larsen’s letter on GIST research needs/LRG launches relapse survey/Pictures: Bob Buch/Sarah and Bob Buch Kerrie, Stephen, and William-Grant Larsen/Dr. Michael Heinrich/Marina and Keith Symcox/Representative Pryce Sarah and Bob Buch in Alaska/Michael and Mia Byrne fund raising in costume/Mehreen Hai letter
January
Maura Cesarini “True Love and Cancer”/Life Raft alliance with AFIP/GIST research and tumor bank/Chicago LRG chapter meets/Arizona rafter gathering Novartis contact information/Southern California chapter meeting/Internet sites with cancer information/Pictures: Maura Cesarini/LRG/AFIP meeting/Maura, Mike, Michaella, and Bella Cesarini/Chicago chapter meeting//Dr. Harvey Wolf/Elaine Rys, Paula Vettel, Gwen Lawson Billie Baldwin, Dick Kinzig, Eleanor Lewis, Darlene Vaughan/Califonia meeting
2002
December
Mel Heller at 80/Sugen drug shrinks tumors in 25% of patients/GIST more common than thought/Life Raft raising funds to match Novartis grant/Michigan and Illinois area meetings planned/Howard Delapenha obituary/Pictures: Irmgard and Mel Heller, Scherzer, Bunn, Mel and Irmgard Heller (2)
November
Connective Tissue Oncology Meeting in San Francisco/Max Foundation provides Gleevec outside North America/Glivec/chemo combinations/Bernie Kaplan/Fishing in the Amazon (John Poss)/Nora Shaulis obituary/Pictures: Norman Scherzer at CTOS/Bernie and Bracha Kaplan with Dan Vasella/John Poss fishing in the Amazon/David and Nora Shaulis/Elsie Hernandez and Michael Josephy.
October
Terry Jennings’ story new Life Raft office opens in NJ/Medicare coverage of Gleevec unlikely/Life Rafter meeting in Arizona/Pictures: the Jennings family/Tricia McAleer Matthew Mattioli James Roy/Arizona gathering
September
London GIST meeting, resistance grows?, antibody tests suspect in some cases/David Cook new LRG coordinator for UK/Rodrigo Salas and Ulrich Schnorf join board/Second GIST WALK for a Cure (Tania)/Michael Byrne, the world’s healthiest GIST patient/Illinois chapter of LRG first meeting/Christian LRG member sub-group/In Memoriam/Pictures: Tania and Robert Stutman’s grandchildren/Tania’s GIST walk/Michael, Mia, and Matthew Byrne/Michael Byrne “Number 571″/Southern California Life Rafters/Illinois chapter Dick Kinzig and Margo Shoup
July – August
Team FLAMES rides the Pan-Mass Challenge once again/Novartis donates $250,000 to the Life Raft Group/President’s message from Stan Bunn/Carol Berres’ journey to hope/Todd Hendrickson obituary/Science Team report: KIT still primary therapy target/Life Raft organizational changes/Pictures: Norman and Anita Scherzer with Dan Vasella/Carol Berres/Joan Canniff and Gary Golnik/Todd, Janet, Tyler, Max, and T.J. Hendrickson/Stan and William Bunn
June
UK board denies Gleevec due to costs/Gleevec approved for GIST in Europe/Novartis wins Galien Prize for Gleevec/Dave Cook’s story/Jerry Rylant and Jill Meyer obituaries/Tuomas and the T-shirt/LRG financial report/Pictures: Cordelia and Dan Vasella/Dave, Irene and Laura Cook/Ana Maria Baldor-Bunn/Tuomas models the T-shirt
May
May meeting photos and stories/ASCO conference in Florida/Marina Symcox and Dan Vasella/LRG organizational meeting/Novartis/DFCI Q&A/LRG candle ceremony
April
Combined Gleevec/surgery trial/SU011248 testing begins/Boston gathering notes/Ana Baldor-Bunn, Mary Golnik, Jacob Waller, George Wolf obituaries/Laura, Ben and Jacob Cooley/Marina Symcox’s journey from hospice to home/Novartis facts
March
Medicare Coverage of Gleevec sought/Boston meeting agenda and article/Harris poll results on Medicare coverage of oral cancer drugs/Dave Blender the “bread man”./Pictured: Life Rafters meet in Toronto/Dave and Aaron/Tuomas and Dr. Joensuu/Life Rafters meet at DFCI
February
U.S. OK’s Gleevec for GIST/Life Raft gathering set May 3-4 in Boston/Demetri: Gleevec a “global collaboration”/Montague friends give $2,600 to Life Raft Group/Life Rafters remembered during visit to Holy Land/Robert Carr, Robert Lecca obituaries/Pictured: Lunch at Scherzer’s home/meeting in Ontario, Canada/Richard and Cindy
January
Life Raft’s Carl Banker carries Olympic flame/Gleevec on way to being No. 1 treatment for CML/Developer of Gleevec carries Olympic torch/Pictured: Life Rafters Rob, Laura/The Byrnes, Penny, Elsie and Michael
2001
December
Lobbying sought for Medicare reform/Legislators who support Medicare coverage/Meeting of minds at Dana-Farber/Marina Symcox: A tale of five Decembers/Pictured: Ronna and Dan in NYC/Tuomas in Finland/Bruce Gunn obituary
November
Novartis seeks U.S. OK to use Gleevec for GIST/From the editor: Silver lining in the cloud of cancer/Life Raft survey draws Novartis interest/Glivec approved in Europe for CML/FLAMES excel in Pan-Mass Challenge/New drug offers hope for Marcel Szyszkowski/Pictured: Silver anniversary/Life Rafters in Portland/Vince in Egypt/Michael and Matthew
October
Special Side Effect Survey issue/GIST walk raises $23,000+ fund nears $40,000/Life Raft patients report fatigue is top side effect
September
Side effects surgery goal near as deadline looms/GIST walk set Sept. 16 in New York state/Glivec moves closer to European approval/Ehud Nehemya, Jeffrey Prichard, Ron G. Martinez obituaries/Pictured: GIST survivor Henry Lange Jr./Anita Scherzer then and now
July – August
GIST researcher Blanke share “our” Gleevec experience/Oral cancer medication legislation wins support/Pictured: Life Rafters on top of Miss Liberty, snorkeling in Hawaii
June
Life Raft patients share responses, side effects/ACOR starts lobbying for Medicare coverage/Life Rafters gather in New York City/Coordinator’s column: GIST has become a chronic disease/Novartis researcher honored for work on Gleevec/Amy Barney, Jim Perham obituaries
May
Gleevec OK’d by FDA for leukemia/Law drafted to change Medicare’s anti-oral drug policy/”Off label” use worries Gleevec researchers/Novartis ships Gleevec within 24 hours of FDA approval/Journal reports on clinical trial patient No. 1/Pictured: Ehud and Ophir, “Crazy Canucks.”
April
Novartis CEO Daniel Vasella: Glivec should clear hurdles/Dr. George Demetri: Real progress with real people, thanks to the global community/Survey: Gender plays a role in side effects/STI-5711/GIST trials at 200+ U.S. hospitals/Pictured: Life Rafters at OHSU in Portland, Dana-Farber in Boston
March
Novartis seeks approval of Glivec worldwide/Notes on STI571 from leukemia group at OHSU/LRG Coordinator’s reflections/Todd Hendrickson, Life Rafter with a lot to live for/Jim Ackerman obituary
February
Survey of Life Raft Group members reveals high response rate/Forbes’ Magazine’s on how STI571 was fast-tracked/New trial sites/Life Rafter Michael Byrne skis!
January
Dr. Brian Druker, developer of STI571, offers end-of-the-year thoughts/STI571 trials expand into third phase/Glivec resistance a concern but optimism prevails
2000
December
Glivec, new name for STI571/Dosage and response rate/Interesting Web site/Life Raft symptom survey, news in brief/Kinase chart