Life Raft Group 2010 Annual Report This year was about celebration for the LRG, which we showcased as our Life Fest symbol — the famous DNA double helix bursting like fireworks in the night sky. Contents

A note about the cover: 2 Patient Education & Support For Life Fest 2010, the LRG wanted Life Fest to focus not on the negatives of cancer, Outreach but highlight all the good things that have come into the lives of GIST 4 Research survivors since diagnosis. Members The LRG Research Team were asked to use these moments to The LRG Patient Registry create a “Tree of Life,” and tell the 7 Advocacy world just what this time has meant to them. We used these Trees as Alianza GIST place cards at our GIST 2010 Gala so Struggling for better treatment that all in attendance could share in 10 Board of Directors the life of a GISTer. Long-time mem- Meet our new board member, ber, Paula Vettel, agreed to let us use David Safford her Tree on our cover as a message of hope to survivors everywhere. 11 Donors

Throughout this report you will notice photos labeled “A Year in Pictures.” These photos have been pulled directly from the LRG Newsletter to illustrate the important moments we covered in 2010. The Life Raft Group

Dear Friends,

Looking back, it’s clear that 2010 was a year of milestones — milestones grounded in the hope of defeating this disease and heralded by the ten year anniversary of GIST treatment. As we look at our achievements this year, we need to consider them milestones of hope — important steps in bringing us to that ultimate step of curing GIST. And this year we had reason to celebrate. Eleven years ago, GIST was a concept known only to a handful of researchers, but everything changed in 2000. GIST was identified and groundbreaking treatment that saved thousands of lives was introduced. In the last ten years, the GIST community has been on a roller coaster ride of new treatments, experts, innovative research, conferences and seminars — an explosion of information that has not yet subsided. Life Fest 2010, held in Jersey City, New Jersey, celebrated this last decade with award ceremonies highlighting those from the GIST patient, medical, scientific and pharmaceutical communities who have contributed not only to the understanding and treatment of GIST, but also whose accomplishments have made a difference to the survival of GIST patients. Perhaps it’s appropriate that ten years later, we mark an important next step in defeating this disease — the initiation of “Project D-Day”— driven by a team-focused, four-pronged strategy to cure GIST. Launched in July as part of our Pathway to a Cure initiative, Project D-Day is focused on gene sequencing & screening, the examination of thousands of drug compounds and strict validation studies. Like that extraordinary day in 1944, which marked the beginning of the end of World War II, our attack on GIST treatment resistance has reached an historic opportunity for success and we truly believe it is our best hope for a cure. On the global front, we formally launched our Alianza GIST initiative with a meeting in Monterrey, Mexico that brought together representatives from ten different Latin American countries. This alliance is an effort focused on regional support and advocacy. Our goal is to improve the knowledge of patients & physicians, increase access to adequate treatment and to support collaboration within the patient and physician communities. Certainly we didn’t accomplish everything we set out to do — like establishing plasma and mutational testing as routine measures in GIST management — but we aren’t giving up and we hope to mark them as achievements in 2011. We have accomplished a lot — all of us — and that drives us to accomplish more. The Life Raft Group wants 2011 to be a better year than 2010 — we want a year marked by many more milestones in the hope of curing GIST. That will take all of us — but given the great support already of the GIST community to the Life Raft Group — there will be much more to celebrate. Thank you for your considerable support to cure GIST and let’s make 2011 the best year of milestones yet.

Sincerely,

Norman J. Scherzer Jerry Cudzil Executive Director President of the Board | 2 Patient Education & Support

Life Fest 2010 GIST Hall of Fame Inaugural Inductees On June 25, the Life Raft Group kicked off its fourth biennial Life Fest — an event that occurs only once Dr. J. Aidan Carney Dr. Charles Blanke every two years and brings together patients, loved Dr. Christopher Corless Dr. Heikki Joensuu ones, doctors and representatives from the pharmaceu- Dr. George Demetri Dr. Michael Heinrich tical industry in a setting that fosters learning and Dr. Brian Druker Dr. Seiichi Hirota encourages the kind of camaraderie that you can only Dr. Jonathan Fletcher Mr. Jeffrey Kindler & Pfizer find amongst people who have been in your shoes. Mr. Gilles Frydman & ACOR The National Institutes of Life Fest has always been a celebration of survival The GIST Patient: Health Clinic and hope. We recognize the enormous courage of Patient Advocacy Groups For Sutent: every patient and family member who has battled and For Gleevec: Dr. Zuleima Aguilar continues to battle GIST. Dr. Elisabeth Buchdunger Ms. Elizabeth Barrett What made this Life Fest special was the Friday Dr. Renaud Capdeville Mr. Carlo Bello Dr. James Christensen night gala event commemorating ten years of GIST Dr. Laurie Letvak Dr. Darrel Cohen treatment. Doctors, researchers, patient advocates Dr. Nicholas Lydon Mr. Stephen Evans-Freke and other key figures in the GIST community were Dr. Alex Matter Dr. Jürg Zimmermann Dr. Joseph Schlessinger inducted into the newly-formed GIST Hall of Fame. The Gleevec Trial Doctors: Dr. Axel Ullrich Moreover, Life Fest 2010 offered an opportunity to Dr. George Demetri Dr. Daniel Vasella & Novartis honor the entire GIST community — patients, friends Dr. Margaret von Mehren Dr. James Watson and family members, GIST medical professionals, researchers and scientists — in a unique opportunity to come together to remember the past and to forge a Humanitarian of the Decade path forward to find a cure. Dr. George Demetri & Dr. Dan Vasella The weekend continued with awards for Humani- tarian of the Decade, Clinician of the Year and Volun- Clinician Volunteer teer of the Year, a star-filled dinner cruise on the of the Year of the Year Hudson, and numerous presentations and workshops, Dr. Jonathan Trent Vicky Ossio on topics like complimentary medicine, plasma test- ing, coping and survival strategies.

June 2010 issue

With immense pride, the LRG was able to honor 10-year GIST survivors at Life Fest 2010. Pictured from left to right: (Standing) Chris Carley, Theresa Hausbeck, Elsie Hernandez, Estelle Lecointe, Jerry Call (on behalf of wife, Stephanie Call), Jas Kiran Kaur, David Epstein from Novartis, Paula Vettel, Alice Sulkowski, Anita Scherzer, LRG Executive Director, Norman Scherzer, Norma Siegel, Dan Cunningham; (Seated) Dr. Joel A Year in Pictures William Sherr, John Poss,

• Garnette Draper, Tom Overley. Invitation to Life Fest 2010

Outreach Additionally, representa- tives from Colombia reached Outreach can be defined as a out beyond their borders by Cruisin’ at Life Fest systematic attempt to provide presenting at GIST Tour services beyond conventional (Global Interdisciplinary Saturday night at Life Fest 2010 was the favorite limits. Nowhere is this more Specialists Training around the part of the down time for all the people who needed than in the global com- World) an international gather- attended. After a day of learning, absorbing as munity where patient concerns ing of medical professionals much information as possible at the many vary greatly, not only by country sponsored by Novartis Phar- classes that were offered, many of the group but also by region. maceuticals. gathered together for a dinner cruise on the The LRG greatly strength- In some countries, formal Hudson. We were treated to the indoor pavilion ened its outreach efforts by facil- organizations have not yet been where we could gaze out at the glittering lights itating and supporting the created but the patient need is of the skyline of New York and Jersey City. formation of several new inter- still great. The LRG continues The weather was perfect for our cruise as the national GIST groups and help- to meet their needs by estab- rain held off seemingly just for us. We were ing existing groups expand their lishing patient liaisons within greeted at the top of the plank by the cruise influence. the country or region. This year boat captain and welcomed inside for what In Iran, where access issues we were able to tap patients in turned out to be a wonderful evening of enter- are at the forefront of patient South Africa, Samoa, Nicaragua tainment, food and revelries. Before long we concerns, the LRG is assisting in and Finland as liaisons and will were dancing in our seats to the beat of the the formation of a group to tar- continue to add much-needed ’80s hits and not long after it just spilled out get these very problems. support in 2011. onto the dance floor. About the time dessert was being served we were informed by the crew that we should hurry outside to the upper decks to enjoy a fireworks display like no other. December 2010 issue There’s nothing like watching fireworks over Kim Trout, a the water, with the double joy of seeing the member of the night sky lit up in multicolored patriotism and Life Raft Group the same reflection on the water. Soon after and Pennsyl- the fireworks we began to circle the Statue of vania Local Liberty. Having the opportunity to see her that Group Coord- close is a memory I will not soon forget. We inator, got were enjoying a full moon on the 26th and that married on added an amazing ambiance as well as a spec- May 8, 2010 tral beauty to our cruise. There’s something surrounded by about a full moon and a dance floor that just her beloved gets a party rocking, cheek to cheek or hip to family and hip we danced that boat right back to the dock. friends. “Don’t It’s a memory that so many will cherish for let GIST stop you from doing what’s important in your life,” says Kim, who despite the hurdles she faces with GIST, lives years to come. I know I will. a life that is overflowing with joy. — Janeen Ryan, LRG Member | 4 Research D-DAY EXPEDITES GIST RESEARCH:

The LRG Research Team ford University which allows The Story of One researchers to access and test this Dutch GISTer In 2006, the Life Raft Group initi- rare tissue and simultaneously BY ERIN KRISTOFF ated a strategic research plan — access the clinical histories of the LRG NEWSLETTER EDITOR Pathway to a Cure — that empha- patients, and the critical investiga- sized cooperation, coordination tion into understanding why a “Why are we so passive?” Jeroen Pit and accountability and brought small number of GIST cells may asks, “If everyone sits still, not much is together 10 of the survive an other- going to happen.” finest GIST research- wise successful A successful Dutch businessman, ers in the world. Its drug treatment. Our Jeroen has never been a passive man. focus was on identi- team has authored When he was diagnosed with GIST in fying projects with over 150 research May 2006, he made his GIST decisions the greatest chance publications. much like he would make business de- of successful out- In 2010, a Dutch cisions—methodically and with clear comes. GIST patient named purpose. For the first four Jeroen Pit, confront- In June, Jeroen had surgery in Hol- years, Pathway to a Jeroen Pit and his wife, Emelie ing his own strug- land to remove a primary GIST tumor. Cure laid the ground- gle to overcome When his GIST metastasized to the work in the search for a cure for treatment resistance, was investi- liver, he and his wife, Emilie, made the GIST and made progress on a gating the best way to donate to decision to travel to Memorial Sloan- broad number of fronts. This GIST research and perhaps help Kettering Cancer Center in New York progress, reported at a three day save his own life. After consulting City. He began 400 mg of Gleevec and event in Monterrey, Mexico, in- several leading GIST researchers, eventually, in late 2007, underwent an- cludes the creation of a comprehen- the patient decided that the Life other surgery on his remaining liver sive blueprint for understanding Raft Group Research Team gave metastases. the mechanisms of treatment resist- him the best chance for finding a Unfortunately, in late 2009, pro- ance, developing mechanisms to cure. He raised 2 million dollars gression forced Jeroen to discontinue test new drugs in the laboratory, and challenged us to accelerate our Gleevec and he was placed on Sutent. the creation of a comprehensive efforts to keep him and other GIST Initial scans showed a positive response. GIST tissue bank housed at Stan- (continued on page 6) After numerous surgeries,

October 2010 issue

In a short amount of time, Dutch GISTer, Jeroen Pit was able to raise an astonishing $2M to support the LRG’s Research Team with the help of trusted family and friends pictured here. A Year in Pictures • procedures and drug changes, Jeroen With another specifically targeted at those asked himself what was next on his list? hurdle overcome, patients who have failed It was time to fundraise. Jeroen began to think first-line treatment. “We wanted to be able to say to about a fundraising “Every patient thinks to ourselves, ‘At least we did everything we plan again. themselves, what if Gleevec could. At least we don’t blame “In April, my CT doesn’t work anymore?” ourselves.’” scan showed that Why are we so passive? Jeroen got on the internet and Nexavar was working, With Project D-Day started his investigation into the GIST so we decided to go This frog means a great deal underway, Jeroen is proud research landscape. for it.” to Jeroen. After his first of what he and his family “I wanted to know if my fundraising Choosing a quality surgery, he got a pet frog as have accomplished. But he a gift from a friend, and after efforts would make a difference. What over quantity approach, his second surgery, a bigger still wonders why this type are the amounts researchers are working Jeroen asked a small frog. Later, Jeroen donated a of effort is not more com- with and who are the key researchers in group of people to small silver frog to each mon in the GIST community. the field?” said Pit. donate larger amounts member of the LRG team in Because GIST is such a appreciation of the patients Once satisfied that he could indeed than he normally they are trying to save. rare disease, funding by make a difference, Jeroen got in touch might. His plan government and most with Dr. Maria Debiec-Rychter of the worked. pharmaceutical companies is very Catholic University in Leuven, Belgium, Within a matter of weeks, Jeroen had difficult. This makes GIST research who told him about the LRG Research raised over 1.7 million euros for GIST largely dependent on private donations. Team. research, roughly two million dollars. “If GIST cases in the US range from In November 2009, Jeroen & Emilie “[That approach] was easier for me 5,000 to 10,000 diagnosed a year, and met with LRG Executive Director, because of my network of colleagues.” 10,000 people donated just ten dollars a Norman Scherzer to discuss research But Jeroen wasn’t satisfied with month, we would have 1.2 million and fundraising opportunities. handing a check over without assurances dollars a year for GIST research.” “Norman is inspiring,” Jeroen recalls, that there was a firm plan in mind for his Jeroen encourages others to follow his “I went home and thought, ‘We can hard work. lead and spearhead their own fundraising make a difference and this research Using the combined ingenuity of the efforts by reaching out to friends and team is the right choice.’” LRG research team, a new plan was colleagues. “Other [research] alternatives were formed: Project D-Day. “You can only create when you do good,” he adds, “But the impact of your Taking the knowledge, understanding things together.” dollar is better at the LRG.” and achievements the researchers have While Jeroen’s situation may seem This impact stems from a number of acquired in the last four years, the team different, the principles are still the same. areas in which the LRG research team would launch a four-pronged strategic “Put it on paper,” he says, “By writing, differs from traditional cancer research. attack on GIST treatment resistance. you further develop your proposition.” The LRG eliminates the overhead costs The four distinct project areas are Using information from LRG institutions usually take, which can range sequencing, gene knockdown, drug researchers about past achievements from 50 to 75 percent of the donation. screening and validation. Each of these and future plans, Jeroen created and In addition, the LRG research team complex areas would have a unique team circulated a brochure addressing why stresses collaboration and sharing leader to ensure maximum coordination, donating is important and the impact of amongst its researchers, who are communication and assess progress at private donations. required to meet in person, as well as all times. As for Jeroen, he has recently taken submit routine progress reports. “The sequencing and knockdown up the mantle of spreading awareness While Jeroen worked on a way to project areas will enable researchers to of GIST treatments in the Netherlands enhance GIST research, his GIST tumors understand what is going on in GIST (probably the next item on his To Do had an entirely different plan. Jeroen tumors,” says Pit. list). was beginning to fail Sutent. Ever mindful of his personal But with Project D-Day finally a Over the next few months, Jeroen struggles with GIST, Jeroen made sure reality, he can’t help looking forward just would undergo radiation, RFA and drug screening would be a part of the a little, “I really think they are going to embolization treatments to control his research plan. This research, which find something that will help us all.” metastases. In March, his doctors at involves testing GIST cells against This is an excerpt from an article that appeared in the MSK decided to start him on Nexavar. thousands of drugs and compounds, is LRG Newsletter, October 2010 issue. | 6 Research

(continued from page 4) patients resistant to Gleevec and Sutent (the only two FDA approved drugs for this cancer) alive. We added one million dollars and the result is the aptly named D-Day Project. Like that extraordinary day in 1944, when the Allied forces stormed the beaches of Normandy, our attack on GIST treatment resistance has reached an historic opportunity for success. Launched in July, Project D-Day focuses on four areas: (1) sequencing the GIST genome; (2) gene knockdown studies or screens that will examine pathways The LRG Patient Registry essential for GIST cell survival; registry: An observational registry of (3) drug screening of GIST cells In 2009, the LRG strengthened its Gastrointestinal Stromal Tumor (GIST) against large libraries of drug com- Patient Registry, creating a much more patients”, the study focused on the pounds, including drugs in late stage sophisticated and comprehensive overall survival for GIST patients in development and approved drugs; and system for entering, tracking and dis- the imatinib era. (4) validation studies where seminating the medical data of nearly The LRG plans to continue utilizing discoveries in previous research will be 1,300 patients. the vital information in our patient repeated for confirmation In 2010, this system provided us the registry not just for reporting to the This targeted approach has already means to publish our findings on a scientific community, but also to keep made significant advances and we are poster at the prestigious American As- GIST patients up-to-date on the trends confident that there will be much more sociation for Cancer Research confer- in treatment, evaluation and other achievements to report in 2011. ence in April. Titled “Life Raft Group criteria we are discovering.

June 2010 issue Quote from Life Fest 2010

“In Dallas [at Life Fest 2006], we [the LRG Research Team] were asked by Norman to get up on the platform in front of this incredible group and say we were going to cure GIST and I was concerned with saying this because we can’t cure it...but, I am delighted to say and in a clean conscience, four years later, that our understanding of GIST has grown such in the last four years that now we

Two human cancer cells seen just before can stand up on this stage and say with determination and they divide into four cells, viewed at 100x conviction that we are going to cure GIST.” A Year in Pictures magnification. —Jonathan Fletcher, LRG Research Team Leader • Advocacy | 7

Alianza GIST belief that change can zations to strengthen our efforts at pro- only be achieved through moting survival of GIST patients.” Our three day meeting in solidarity. The meeting reached its climax when Monterrey, Mexico, brought Important alliances were the Coalition proudly announced their together some of the best GIST re- achieved, including one with the plan to promote survival of GIST searchers in the world. But a large part Tecnológico de Mon- patients, which they of that event focused on a coalition of terrey, an institution called the Monterrey patient representatives from all over committed to the Declaration, focused Latin America, who met for the first development of the on four key princi- time to outline their mission and com- first center for cancer ples: mitment to promoting the survival of research in Mexico, •To improve the GIST patients in Latin America. and another with knowledge of pa- The Coalition, which would even- The Max Foundation tients and physicians. tually become known as Alianza GIST, and the Life Raft •To increase gathered in a room lined with flags Group, organizations patient access to representing ten countries across Latin dedicated to improv- adequate treatment America and the United States. The cir- ing the lives and and resources. cle of flags symbolized the unity survival rates of •To support local among the patient community and its patients with rare patient support cancers worldwide. organizations, in- These alliances provided a number of cluding the creation of new ones. resources to help Alianza GIST identify •To encourage collaboration and and reach GIST patients and dissemi- coordination with the physician com- nate information and education into munity. Latin America. Rodrigo Salas, the Mex- Alianza GIST is a partnership of ican representative of the Coalition, patient advocates from 10 Latin Ameri- summed up the purpose of the meet- can countries. The following Coalition ing and resulting alliances as “an ex- members were present at the Monterrey Norman Scherzer (center), pictured with Rafael Becerra and Rafael Vega of GIST traordinary historic event paired with meeting: Sandra Mesri of Argentina, Colombia in Monterrey expertise from our partnership organi- (continued on page 8)

April 2010 issue

Representatives from ten Latin American countries gathered in Monterrey, Mexico to discuss regional patient issues and how best to combat them. | 8 Advocacy

(continued from page 7) trials have broad inclusion criteria Vicky Ossio of Bolivia, Dr. Alexandre designed to “cast a wide patient net.” Sakano of Brazil, Piga Fernandez While this approach has the potential Kaempffer of Chile, Dr. Rafael Vega of to find unexpected benefit, it also has a Colombia, Rafael Becerra of Colombia, downside, especially in registration Michael Josephy of Costa Rica, Alejan- trials. The downside is that the trial dro Miranda of the Dominican Repub- may not show enough overall benefit lic, Rodrigo Salas of Mexico, Maria to be considered successful. Isabel Gomez de Soriano of Venezuela, Conversely, a trial can be designed Norman Scherzer of the Life Raft Researcher Maria Debiec-Rychter with more rigid criteria in an attempt Group and Pat Garcia-Gonzalez of The presenting at the research meeting in to “enrich” the patient population. The Max Foundation. Monterrey, Mexico. goal would be to enroll only patients that are predicted to respond. mutational status: KIT exon 11, KIT Struggling for exon 9, PDGFRA D842V and wild-type Plasma Testing Better Treatment GIST. In addition, there is another In 2009, we made the case that… “At group comprising the “rare” mutations this time, plasma level testing may be Mutational Testing (KIT exons 13 & 17, etc). The different the biggest potential opportunity to In 2010, the LRG continued its strong types have different initial responses significantly improve GIST patient sur- support of mutational testing, urging to Gleevec and resistance occurs via vival in the near future. The question clinicians to make mutational testing a somewhat different mechanisms. GIST remains: Will plasma testing go the routine part of GIST treatment and to patients and doctors can use this not way of mutational testing, with only a use this knowledge to their advantage only for clinical trials but, in some lucky few being offered the test?” in choosing a clinical trial for Gleevec cases, to consider off-label treatment In 2009, plasma testing gained resistant GIST patients. options. ground and acceptance as a possible In the not too distant future, we The GIST clinical trial era began in treatment tool culminating in the may have newer KIT inhibitors that earnest in 2000 with the first Gleevec launch of a Novartis oncology overcome most types of GIST resist- trials. For almost ten years now, almost program, GIST Alliance, which ance. But for the present, it is becoming all GIST trials have been inclusive trials encouraged patients to learn about increasingly clear that GIST can be allowing most or all of the various plasma (blood level) testing and divided into four main types based on sub-types of GIST. Today, some clinical financially supported this testing. On April 21, 2010, the U.S. Food and Drug Administration (FDA) issued February 2010 issue a warning letter to Novartis criticizing its promotion of blood level testing on its CML and GIST Alliance websites which led to the eventual termination of these programs and its financial support of these tests. Since the FDA’s warning and the subsequent cancelation, the Life Raft Group has worked tirelessly behind the scenes to try and resume this criti- cal testing procedure. At the close of Josalin Dunn, the little girl 2010, we were happy to report that who stole hearts at Life Fest plasma testing would be renewed in 2006, is now 12 years old 2011 and we will remain committed to and celebrated her five-year

A Year in Pictures promoting this practice in the GIST cancerversary in 2010. medical and research communities. • FIGHT OR FLIGHT: to keep on living. The results were as expected; it was A Chance Encounter in GIST and reacted to this new drug whose name was unknown to us at the the Sky Compels One time. The race to learn more about what GISTer to Do Her Part a GIST was began in earnest and to try BY PIGA FERNANDEZ to get a hold of this new miracle drug. We learned about The Max Founda- My journey as a cancer fighter began tion and the Novartis Glivec International fourteen years ago during a routine gy- Patient Assistance Program (GIPAP) necological checkup in December 1995, program and I applied immediately. I Piga (center) with Dr. Alexander Sakano when a tumor was detected. started my treatment with Glivec, (left) and Vicky Ossio (right) at the first After a large resection, a round of ra- followed by periodic checkups every meeting of Alianza GIST. diation therapy followed. Four years later, three months in Guatemala. in 1999, I had a local recurrence that was The power and magic of the solidar- velopment of his illness, it was as if she again resected and due to complications, ity around me does not cease to amaze was narrating my own story… an initial a temporal colostomy was required, me! I remember having received the gift diagnosis, surgeries, radiations, metasta- followed by brachytherapy treatment. of airplane tickets to travel to my check- sis and, in his case, also chemotherapy. Until that time, I trusted my attend- ups from good people that I didn't even The similarities were uncanny, the big ing physician, but the following year know, and I remember with immense difference was that her husband was (2000), when a new cancer recurrence gratitude the support of my family and dead and I was alive. surfaced, he failed to give it any signifi- friends who looked after my children So many questions filled my mind! cance, which led me to seek a second while I was away. Was he diagnosed properly and given opinion as I lost faith in him. Maybe he Once again and every day, I give appropriate treatment? Did he have thought the battle was lost, something thanks to the Lord for the gift of life, for access to enough information to decide that I could not let enter my mind. the generosity of Novartis, for the effec- whether or not to trust his diagnosis? The oncologist I consulted later tive and close way The Max Foundation Could it have been a misdiagnosed approached my case with commitment monitors my treatment, for the solidarity GIST? And if so, had it been identified and empathy. He asked for a few days to of my friends near and far, and for the and treated properly, as in my case, study my medical chart and requested strength shown by my children and their could he still be alive? more specific tests, which confirmed support throughout this journey, as they Of course, we will never know the how far off base my previous physician are the main reason behind my drive to answer to all those questions, but after had been. The new diagnosis was “local fight this battle. Thanks to all of them, I the Monterrey meeting I felt compelled recurrence with hepatic metastasis.” have been able to look at the future with to return to my country to try to do This again required surgery to resect the new and hopeful eyes. my bit in the fight against this disease. tumor and a permanent colostomy. A Today, I also want to express my This conversation further cemented my month later, I underwent a hepatectomy heartfelt thanks to the Life Raft Group decision and confirmed the need to pro- to resect three metastatic nodules. for their invitation to participate in their vide physicians with all the information In 2002, two more nodules were Alianza GIST initiative. At this point, I possible related to this cancer so they detected in the liver, but this time a want to share with you something that can draw upon such information when resection was impossible due to loca- happened during my return trip home making a diagnosis. tion. Again, my oncologist took his time after participating in the Alianza GIST It also confirmed the need to arm and consulted with other specialists in planning meeting in Monterrey, Mexico. GIST patients with all the wealth of the United States. He then discussed A Uruguayan lady who lives in New information available so they may better with me what he felt was my only York sat beside me on the plane, and just understand what is happening inside chance; pending test results, a new after we had exchanged but a few words, their bodies. I need to support them so drug treatment was being used in CML one of those magical moments when two they never feel alone in this fight for which could help me. Waiting for the souls connect occurred. She began telling their lives, and in some way, give to results of the tests was extremely diffi- me part of her personal story. others the same gifts I have received cult. I was facing the temporality of life, Her husband had passed away two during my journey. although filled with great hope and years prior after a battle with cancer. This is an excerpt from an article that appeared in the faith, I saw before me a light, a chance When she was describing to me the de- LRG Newsletter, February 2011 issue. | 10 Board of Directors

The LRG would like to extend deep thanks to its generous and committed Board of Directors. Each year our Directors strive to push themselves further in support of GIST patients and in 2010, the Board raised a combined $175,000 to support GIST research and patient support, education and advocacy.

Robert Book Also this year, the LRG provider with business Stan Bunn Board welcomed a new clients large and small, Mia Byrne director, David Safford to all across the USA. its ranks. David’s professional sales Chris Carley David became a mem- management career has Jerry Cudzil, President ber of the GIST family on included positions in Jim Hughes January 21, 2010. After re- both Fortune 500 and Jerry Knapp ceiving an initial diagnosis small business environ- Ray Montague that gave little room for ments for specialty prod- John Poss hope due to the extensive uct distribution, business Marietta Robinson nature of his metastatic services and high tech cancer, pathology reports David Stafford data solutions. Areas of David Safford later confirmed kit+ GIST expertise include strate- Rodrigo Salas and a new mission was formed. gic corporate partnerships, innovative Lawrence Selkovits David is inspired by the stories of GIST problem solving, group dynamics, Silvia Steinhilber patients and is dedicated to helping not neuro-marketing, keynote addresses only control the positive outcome of his and other public speaking engagements. own disease but in those of the new GIST David is also a member of Vistage Key friends he has made, by participating in Executive Group in Seattle. the efforts of the Life Raft Group. He has been married to his wife, David Safford is the Chief Business Cherry for over 18 years and has three Development Executive for Insight wonderful daughters, Natalie, Kiana e-Tools, a growing high tech services and Alani.

December 2010 issue April 2010 issue

In August 2010, LRG Kate Poss, Board Member, Marietta daughter of LRG Robinson’s husband, Board of Director Jim Robinson (on right), and GISTer, John passed away from GIST. Poss not only Jim was a dedicated and managed to run outspoken public servant, the Austin who frequently wrote and Marathon in spoke on criminal justice February 2010, issues. He was Dean and she also managed a Professor of Law at Wayne State Law School, served as the to raise a President of the State Bar of Michigan and in 1998 he was tremendous $7,000 while she did it! appointed by President Clinton to be Assistant Attorney General And when Kate finished that last mile, John in charge of the Criminal Division of the U.S. Department of was waiting for her with a big smile. A Year in Pictures Justice. He touched the lives of so many and is truly missed. • | Donors 11

$100,000 & Above Robert & Jeanie Eller $500 –$999 Daniel Erlichman BST Consultants Alison Anderson Thomas & Jane Green Novartis Pharmaceuticals Paul Andiorino Pierre Grellet-Aumont Pfizer Inc. Scott Ascherman Carolina & Dan Heflin Ryan Atkinson Jan Hofstetter $20,000 – $99,999 John Atorino Michael Hofstetter Richard Azevedo Carlos & Liana Baldor Steven Hollender Glen P. & Elizabeth J. Banks Helen Frey Douglas Horst Joe & Melissa Barbey Rodrigo Salas Arrow Steel Inc David Bayles Paul Karpowich Ian Behar $10,000 – $19,999 Joe Kippels Randy Beil John R. Kirk Jerry Cudzil Wayne Bellet Joy & Douglas Knopp Long-time LRG member, Ruijia Mu, gives each Jim Hughes Eric Bischoff Arbor Foundation Inc Louise W. Korder month to our patient support efforts, even after the Jack R. LaDue Marisa & Richard Bolognese passing of his father, Xiangjie (left), in March 2008. Jerry Knapp Joe Bonavita Marietta Robinson Robert Lynn David Malvern Joseph Brachfeld Michael Ginsberg Michael Meyer RTI Ann Amer Brennan Lawrence Selkovits Valerie Matthews Gary Glasser Middlegate Insurance John Matway Timothy Brennan Gary Godshaw Frank Moretti Pam Broadus $5,000 – $9,999 Patrick Moore Andrew Goldman Matthew Morris Salvatore Muzio Bruce E. Brockstein Mark Green Vincent Murray Michael DiMaio Network for Good Kelly Buckley Glen Gregorio Norma Nadeau Genentech Roberta Offen Chris Carley Robert Grillo Allen Oppici Martha Smart Stephen Oplinger Bryan Carroll Sharon & Jim Guizzetti Parente/Risner Family Fund Pat Brady & David Smith Melinda & John Poss Thomas Carroll Todd Hirsch Donald Perlman Synta Pharmaceuticals Corp Andrew Roberts Lyon Carter III Michael Hommeyer Thomas Pernetti Jonathan Rosee Jiayi Chen Matt Howard Floyd Pothoven $1,000 –$4,999 Steve Rosenberg Nick Chiara Paul Huchro Project Flag Nasser Ahmad Norman & Anita Scherzer Jae Choi Vince Irwin James Pryor ASCO Jacky Lewkovich Schiestel David & Maxine Clark Jennifer James Qualcomm Matching Gift Brian Behrens Carlos Sorrentino Cohn & Wolfe R. Jesse Program David Bell Nicole Sparks Michael Cudzil Sachin Jhangiani John W. Rafal Ettore Bianchi Silvia Steinhilber Cuyahoga Cnty Land Timothy Joyce Vivek Raman Bob Book Stanford University Revitilzation Corp Levent Kahraman Andrew Rich Kathryn Byrne Systems Plumbing LLC Doris Dallow Richard & Sue Kinzig Darren Richman Mia & Mike Byrne Jean & John Talken Doug Davies Matt Knopman Ricky Romano KS Carberry Andrew Tarica Deciphera Pharmaceutical Mark Landis Ellen Rosenthal Celtic Therapeutics Brian Tilyou John Denning Marc Lavine Armin Rothauser Fred Chamanara Gail & Frank Tondo Joseph DiMaria Lai Oy Louie Tom Saxton Benji Cheung Angelo Vasiento Vicki Dotson Steven Luskey John Scarrone Perry DeVitto Cali Wojdyla Michael Fargione James McAuliffe Linda B. Schroeder DiMaio Ahmad Capital LLC John Young Alexis Feliciano Mark McCarthy Dudley Scott Dublin's Pub Kim & Chris Zimmer Timothy Fischer Michael McKean Ross Shapiro

February 2010 issue

Not only did Carolina Ponce- Williams celebrate her four-year cancerversary in 2010, she was blessed with the one thing she always wanted—a child. “I am so thankful to be able to celebrate my four year NED anniversary this year, especially because I am still a wife, a teacher, a daughter, a friend and now I am also a MOM!!” | 12 Donors

Mali Sinai Alice Boyle Judy & Robert Earl Derek Smith Paul Bradshaw Patricia Ehresmann Robert Spellman Dr. David Brandis Laura Eldred Rajeev Srivastava Susan Brandt Gail A. Ellis Alice B. Sulkowski Brian Brauth Russel & Bonnie Emerson Thomas Tarantino Susan Brazier Tessie & Arthur Epstein Jordon Thompson Linda & Kenneth Brecko Joshua Feiler Timothy V. Turpin James Breitman Steven Feinberg Richard Vandermass Brian Brennan Rita & Mario Ferraro Bohn Vergari Michelle Brophy Christopher Flammia Marc Wasserman Timothy Brown Lisa & Peter Fleming Ira Weidhorn Barbara & Wayne Bruce Glenn & Beth Franz Duane Williams Alexandra Buchanan Ralph & Joyce Fredericks In 2010, the LRG offices went "intern"-ational when Hans Wyss William Buchanan Effie French Stan Bunn Liz & Jeff Friedman Samantha Lecointe flew all the way from France to $100 –$499 Lynn B. Burrows Shawn Gallagher be the newest LRG intern. Here she is (left) posing in Sunil Aggarwal Ann G. Byrne Joseph Gallo the “Raft” with her sister, Estelle, at Life Fest 2010. Rizwan Akhter Tom Byrne Pat Garcia-Gonzalez David Alexander Ashley Candy Dan Gardella James Kaletta Brian McBride AMA Laboratories Nick Caradonnna Elizabeth Gardner Geneva Kanter Sam McCandless Steven Ammann Tom Castelnuovo Matthew Gardner Bracha Kaplan Terry McCarty Erick Ammons Kevin Cavolo Jaime Garland Sherman Kaplan Ellen McDonald Karen S Ammons Karl Cerny Marion “Pat” George Jim & Dot Kase Rhonda McGhee Catherine Avila Ilya Chalyt Saju Georgekutty Russell & Cindy Kaye Stephanie Meltzer Harold K Baldwin Robert Chernow Anita Getler David Kern Terrill Meyer Sandra L. Banks Mark R. & Bette Kristen L. Getler Su Young Kim Glenn & Linda Miller Harold & Gloria Baston Christofersen Christine & David Ginsburg Marlin Kirshenbaum Jeff & Robyn Miller Lisa & Andy Batchelor Sharon Clarke Robert & Sandra Glassman Sam Kirshenbaum Martha E. Miller Richard Bellofatto Vincent Coccia William Goebelbecker Mark Klizas Stephanie A. Miller Betty Benjamin Kenneth Cook Sachin Goel Alexis Knopp James Mills Wayne Bennett Deedee Corradini Mr. & Mrs. Roger Stephen J. Korn Robert C. Minion Brian Berg Anna Costato Goldberger Chuck & Peggy Korte Alejandro Miranda Kris Berg Myrna Cramer Gerald Alan Goldman Jeff Korte Mina Mitby Patricia M. Berg Crew of Motor Yacht Bayou Jay Goldsamt Marc Kosaka Angelo Monello Louis & Joan Berge Maureen Culhane Eli Goldschmiedt Erin K. Kristoff Ray Montague Ken Berger Dan & Mickey Cunningham Maria Isabel Gomez Phillip Kukucka Ruijia Mu Isadore Bergner Pam & John Curtis Felicia Graziano Cathryn K. Kwart Sean Mullen John Bertrand Patricia Dahl Adam Norton Green Cayetano Lacroze Francis Mulvey Margaret O. Beyers Daniel & Monica Dean Avi Greenberg Malcolm Lane Seishin Murahashi Storrs & Suzanne Bigelow Peter Deering Gesche Haas Joseph Lanzisera Jessie & Lita Naldo Kerry Birch Carl & Mary Del Balzo Hajduk Family Estelle Lecointe Michael Neal John Birdsall Dell Direct Giving Campaign Joseph & Allyson Hall Christopher Leech Richard Nechtow Ben & Susan Bishop Michael Deluca Patricia Hampel Jeanine & Michael Lemker Brian & Amy Newman Kathleen A. Bishop Neal Desai Robert & Sue Hare Jonell & Isadore Lenglet Marie Niemann Terry & Susan Bishop Dr. Tanya DeSanto Basil Harrison David Levene Sumito Nishitate James & Patricia Blake Jerome Diamond Evelyn Harrison Cameron Lewis Dr. Geoffrey Oddie Dena Blood Karl Heinz Didshun Marcia Harrison Michael Lightle James Oliver Barbara Bodinson Ann & Sam DiMisa Margaret Lynn Hartman Abbe Lindebaum Christina Osborn Patricia Bonda-Swenson Robert K. Dobbs C. Douglas Hartsell Clare Lindquist Joyce O’Shea Henry H. Borland Mary Domski Theresa & Edward Hausbeck John Lofaso Vicky Ossio Leigh Borland William Chip Douglas Arthur Hawkins Joshua Lonsk Thomas Overly Pat Borland Jennifer Dunn Paul Hill Albert Lotz Terrasa & Stair P.A. Albert Boyle Julius M. Dziak Janet Hines Timothy P. Lowney Slevin & Hart P.C. David Hinton Adrienne Lucier Anne Pacifico Stanley Hladik Kevin Lynyak John Pagan Ed & Terri Housbeck M.M. & P. Mates Program Elizabeth Reamer Palmer Angela & Daniel Howell Edward Mackiewicz Umesh Patel AW Landscapes Inc Lucille Madsen Abbas Patni Independent Fiduciary Michael Mahoney Jim & Beth Patti Services Inc Chet Malhorta Tina Paulsen United Seamen’s Service Inc. Timothy & Gail Mansfield Susan & Christian Pedersen International Donald & Gwen Marcus Christopher Pernetti Longshoremen’s Assoc. Mary Culhane & Armando & Susie Petruccelli Israeli GIST Patient’s Org William Marre Randi Pezzuto Jim Jacobson William L. Marre Kermit Popp Ann C. Johnson Friends of Mike Matthews David Portnoy From left: Henji Cheung (2nd Place), Cayetano Lacroze Carol Jordan Richard W. May Kate Poss (1st place) & Jonathan Rosee (3rd place) were this David Josephy Tricia A. McAleer Purcells Cove Social Club year’s winners at our annual NYC Poker Tournament. Michael Josephy Peter McAree Amit Rametra | Donors 13

Sendhil Revuluri Robert Tikkanen Stuart Elson Pat & Mark Ostroff Thomas Richetti Gary Trombley Eleanor Falkenstern John Padgett Andrew Rick Ayumi Tsuno Marco Filipovic David Palacios Amit Rihal Joyce & Stanley Tucker Henry M. Forster Dorrie Pariser John Risner Patricia Ann Tyler Daniel & Meg Foster Partners Healthcare Carlos Rizowy John Venderzyden Bonnie Glenn Larry Payne James & Cindy Robbins Paula & Philip Vettel Anne Goodwin Bonnie Pedigo Charles Roberts Linda B. Volkening Louis & Suzanne Greenwald Paul C. Perkus Mike & Juli Rodriguez Frank Vondrasek Bill & Judy Griesel Precision Payroll Service Roger Rosenblatt Judith A. Wagman J. Robert & Helen Hall Rose & Richard Pridgen Arnold Rosenthal James Wang Bonnie & Gary Halvorsen Ted L. Purcell Lisa Rosenthal Sydney Wasserman Robert & Heather Hamilton Otto Raggambi Sara R. Rothschild Margot Weber The LRG would like to S.A. Hann Robert Rennak Jane Rowan Rebecca Wedgworth give big thanks to Kim Rebekah Hardie P. Rocca Tammy Roy Ruth Weigand Tallau of Innovative Patrick Wayne Hare Pablo Rodriguez Roger D. Ruggles Susan Weigand-Smith Images who donated Elaine Hauptman Mary Rohr Ken & Jane Runyon Charles Weinberger her time and experience Elizabeth Healy Gary R. Rottmann Mackenzie Russel Karen & Ronald as a photographer in Craig Hobbs Troy & Marie Saliba Lawrence & Janeen Ryan Wertheimer Marc Holloway Magdalena Sarnas 2010, helping us keep Hassan Safdar Richard Whiteman Nancy C. Howie Richard Schoenbohm David Safford Peggy & David Wicker these moments alive for Eunice Howley Rexford Schroyer Steven Saggese Wimal Wijenayake many years to come. Abrahim Hussein Darlene Shaw Arun & Jayshree Sanghvi Carolina Williams Sharon & John Iota J. Bert & Linda Smith Ashleigh & John Santamaria Geoffrey Williams Gary & Chris Borda Jim Kardong John Snyder James Sarvis Robert Wilson Beverly Brooks Marcia Keane Lawrence C. Sparks Marjorie Scheker World Wide Events James & Joy Brossia Karen Kelley Lesley & Harvey Spencer Sheldon Scher Joseph & Anna Zappala Dineen Burke Gale Marie Kenny Akshay Sura Raymond & Cynthia Glenda Zick Troy & Janet Burns Maureen Keyhani Thomas J. Tax DDS Schiestel Martha Zielinski Jerry & Stephanie Call Ann & Mitch Kremer Kendra Tobes K.M. Schlichting Joshua Zucker Kendra Cerda Claudia Lapcevich United Health Group Emp John F. Schmelzer D.O. Alice May Clark Thomas W. Lynch Giving Helga Schnorf $50 – $99 Dale Claypoole Eric Markowitz Joan Urban Karen A. Kelley & Cheryl Abhau Ellen Colucci Sally McCarthy JoEllen Urban Joseph V. Schuder Janet & Marvin Adelman Robert & Regina Cooley Robert Melillo Frederick H. Vanderbeek Jr. David Schulte Joel & Judith Adelman Toler, Bly & Associates CPA Howard & Sandra Meridy Pradeep Vijayakumar Margaret F. Scott Therese M. Ahlers PLLC Audrey Merry Inna Voloshina Oren Shaked Cheryl Asato Sarah & Steve Crowder Robert & Hedy Miller Maren & Stanley Saul & Carolyn Shenberg James Baer Maria Cutrone James Mullen Waksmundski Richard Shoenbohm Cheryl Barr Megan E. Danielson Marsha G. Mullera Rebecca Warren Amer Siddiqui Ronald Baynor Howard & Arlene Danziger Michael & Diana Neirink Stephen & Teri Weisenstein Norma & Robert Siegel Andrew Bell Peter & Jane Del Vecho Colleen O’Brien Daniel White Lawrence F. Signora David & Ruth Bell Christina DiLullo Jennifer Olcovich Scott Wicker Howard & Lois Silberberg Carole Blood Paul W. Dunn & Family Marilyn Jane Oosterhuis Charles Wilson Bob & Debbie Silverstein Robert & Ann Bonda Jackie Edwards Alejandro Ortega Nancy P. Zinser Karam Singh Diana Smith Peter Smith I Roger S. Smith Allocation of Funds for 2010 Research Sunista Smith I Information & Education Thomas L. Smith Total Expenditures: $2,835,317 I Patient & Family Services Bruce Sneed I Advocacy Benjamin Snouffer I Sobel & Company CPA Management & Fundraising Ann Spar Philip Steinhauer John Stinson Jean Stride Tania Stutman STV Engineers/Architects/ Planners Kelley Suwak Thelma Swindell Kim Tallau Susan Tayman Andrew Templar David Templar John & Susan Thompson Linda A. Thompson Pat Tikkanen The Life Raft Group PRSRT STD 155 US Highway 46, Suite 202 U.S. POSTAGE PAID Wayne, NJ 07470 ALBANY NY www.liferaftgroup.org PERMIT #370

ensuring that no one has to face GIST alone

upr n advocacy and support ni edo. we until through

o aecne n eptoeaffected those help and cancer rare a for

idacure a find

edrc eerhto research direct We h ieRf Group Raft Life The