outreach feb 2012

7/31/2019 Outreach Feb 2012

1/16

Spring 2012 OUTREACH 1

OUTREACH VOl XII IssUE I spRIng 2012

T H E f A C E s O f C l I n I C A l T R I A l s

Read about theex erie ce o a e


2/16

The year is off to a great start for us. Private funding

for pancreatic cancer research received a momentousboost late last year when the Daniel and Janet MordecaiFoundation made a record $1.4 million gift to theorganization to fund part of the Pancreatic Cancer ActionNetwork's 2012 Research Grants Program. The generousdonation, made in memory of Daniel Mordecai, whopassed from the disease in 2002, will fund ve research

grants this year, including one Pathway to Leadership award and four CareerDevelopment awards.

We are profoundly grateful for the benevolence shown by Mordecai FoundationPresident Janet Mordecai and her children, whose investment will make asubstantial difference regarding research efforts into the disease for years to come.The foundations gift is destined to have a major impact on our efforts to build arobust, comprehensive pancreatic cancer research community and fund criticalresearch that can lead to early detection methods and better treatment options forthose facing the disease. The additional investigations made possible through thefunding could also move us closer to realizing our vision of doubling the pancreaticcancer survival rate by 2020.

In addition to helping build a robust pancreatic cancer research community andfunding important research, we also strive to ensure that patients are aware ofthe latest research. To this end, we recommend that patients consider clinicaltrials when exploring their treatment options. Clinical trials could have a positiveimpact on an individuals treatment and will help speed scienti c progress toward

therapeutic breakthroughs for those who have yet to be diagnosed.To emphasize the importance of clinical trials, we declared January as NationalPancreatic Cancer Clinical Trials Awareness Month. This initiative allowed us toshine a spotlight on the need for increased patient participation in clinical trials.We have also dedicated this issue of Outreach to clinical trial awareness. Asyou read the articles, you will learn that clinical trials are an essential part of theresearch process and that increasing enrollment in them is also critical to our goalof doubling the survival rate by 2020.

As we start 2012, I want to thank you for all of your own efforts on behalf of thepancreatic cancer community and encourage you to remain engaged throughoutthe entire year as we move toward our goal of changing the course of history for

the disease.Sincerely,

Peter KovlerBoard Chair

P.S. I am pleased to announce that the Pancreatic Cancer Action Networkhas been recognized by Philanthropedia as one of the top ten outstandingcancer charities in the U.S. for 2011. Philanthropedia was recently acquiredby Guidestar, a leading charity watchdog organization. To learn more, go towww.myphilanthropedia.org .

BOAR Of IRECTORsPeter Kovler, Chair, Washington, D.C.Laurie MacCaskill, Vice Chair, Los Angeles, CaStephanie R. Davis, JD, MA,

Sherman Oaks, Calif.Tim Ennis, North Port, Fla.Julie Fleshman, JD, MBA, President & CEO,

Los Angeles, Calif.Stevan Holmberg, MBA, DBA, Potomac, Md.Jason Kuhn, Tampa, Fla.Terrence Meck, New York, N.Y.Jai Pausch, Chesapeake, Va.Stuart Rickerson, Rancho Santa Fe, Calif.Jeanne Ruesch, Chevy Chase, Md.Cynthia Stroum, Founding Chair Emeritus,

Seattle, Wash.

sCIEnTIfIC A VIsORy BOARDafna Bar-Sagi, PhD, Interim Chair

New York UniversityMichael Hollingsworth, PhD,

University of Nebraska Medical CenterChristine Iacobuzio-Donahue, MD, PhD, Johns

Hopkins University

Craig Logsdon, PhD,MD Anderson Cancer Center

Anirban Maitra, MD, Johns Hopkins UniversityFrank McCormick, PhD, FRS, University of

California, San FranciscoGloria Petersen, PhD, Mayo Clinic

Anil Rustgi, MD, University of PennsylvaniaDiane Simeone, MD, University of MichiganMargaret Tempero, MD,

University of California, San FranciscoCraig Thompson, MD, Memorial Sloan-KetteriBob Vonderheide, MD, DPhil, University of

PennsylvaniaGeoffrey Wahl, PhD, Salk Institute

ME ICAl A VIsORy BOARJordan Berlin, MD, Chair, Vanderbilt-Ingram

Cancer CenterMarcia Canto, MD, Johns Hopkins UniversityChristopher Crane, MD, MD Anderson

Cancer CenterJason Fleming, MD, MD Anderson Cancer

CenterJane Hanna, RN, OCN, Georgetown University

HospitalMokenge Malafa, MD, Mof tt Cancer CenterMary Mulcahy, MD, Northwestern UniversityEileen OReilly, MD, Memorial Sloan-Ketterin

Cancer Center

Maria Petzel, RD, CSO, LD, CNSD, MD Anderson Cancer Center

Vincent Picozzi, MD, Virginia Mason MedicalCenter

Mark Pochapin, MD, Jay Monahan Center forGastrointestinal Health

Mark Talamonti, MD, NorthShore UniversityHealthSystem

CHAIRs MEssAgE A fAR-REACHIng $1.4 MIllIOn gIfT

OUR MIssIOnThe Pancreatic Cancer Action Network is nationwide network of people dedicated to workingtogether to advance research, support patients andcreate hope for those affected by pancreatic cancer.


3/16

Spring 2012OUTREACH

1

Noted philanthropists and key supporters Jeanne WeaverRuesch and Terrence Meck recently joined the PancreaticCancer Action Networks National Board of Directors. Inaddition, Jenny Isaacson and Lynn Matrisian, PhD ,assumed pivotal leadership roles as vice presidents on theorganizations executive team.

Jeanne , who lives in Chevy Chase,Maryland, is Chair of the Ruesch FamilyFoundation, a charitable entity in theWashington, D.C. region, that shefounded in 2004 with her late husband,Otto J. Ruesch, who passed from

pancreatic cancer that same year. Priorto the foundations founding, she wasthe Executive Vice President and Chief

Operating Of cer of Ruesch International, an internationalnancial services company providing payment solutions for

corporations worldwide.Jeanne has served on numerous boards and advisory

groups and presently serves as President of the NationalSymphony Orchestra at the Kennedy Center, as a memberof the Kennedy Center International Committee, a Boardmember of Georgetown University Medical Center, and onthe Executive Committee of the Centers Doctors Speak

Out group. The Ruesch Foundation is the founding donorof the Otto J. Ruesch Center for the Cure of GI Cancerswithin the Lombardi Cancer Center at Georgetown UniversityMedical Center.

She is af liated with two corporate boards, servingas Chair of the Board of Directors of AUI Imports andas a member of the Bialek Environments AdvisoryCommittee. Jeanne is also a member of The Committeeof 200 , a worldwide organization for entrepreneurialbusiness women.

A resident of New York City,Terrence serves as the ExecutiveDirector of The Palette Fund, a privatefoundation that honors the legacy of hislate partner, Rand Harlan Skolnick, whopassed from pancreatic cancer in 2008.Through collaborative grant makingand supporting programs that valuehuman rights and education, the Palette

Fund, since its inception in 2009, has bestowed more than$2.5 million in grants to nonpro ts bene tting LGBT youth,patient navigation, and nutrition and wellness initiatives.

Terrence, who holds a B.A. in political science fromPrinceton University, also serves as President of real estateinvestment rm Intrinsic Capital. In addition, he serves on theboards of the Movement Advancement Project, the New YorkZen Center for Contemplative Care, the Harold P. FreemanPatient Navigation Institute, the Threshold Foundation andGod's Love We Deliver. From 2003 to 2008, Terrence andRand co-owned The Raven Resort Properties in New Hope,PA, a business catering to diverse communities.

With more than 25 years of experience in fundraising,marketing and public relations, Jenny was named Vice

President for Community Engagement

in June of 2011. In her role, she providesoverall management and strategicdirection for the organizations DonorRelations, Corporate Relations andCommunity Outreach programs.

Hailing from Great Britain, whereshe graduated with honors from theUniversity of East Anglia, Norwich,

Jenny previously served as Vice President of Brand Marketingand Communications at the Starlight Childrens Foundation,overseeing the foundations fund development, corporatepartnerships and cause-related marketing efforts, as well as

helping direct the organizations visioning, strategic planningand brand marketing.

In January 2012, Lynn began serving as Vice Presidentof Scienti c and Medical Affairs, a position in which she

oversees the organizations Researchand Scienti c Affairs and Patient andLiaison Services programs. Previously,she served as professor and chair ofthe Department of Cancer Biologyand Ingram Distinguished Professorof Cancer Research at VanderbiltUniversity, where she worked for 25years. She earned her doctorate in

Molecular Biology at the University of Arizona, completedher postdoctoral training in Strasbourg, France, and joined

Vanderbilts Department of Cell Biology as an AssistantProfessor in 1986.

Highly regarded for her mentorship skills and expertisein the eld of cancer biology, Dr. Matrisian is also a pastpresident of the American Association for Cancer Researchand has served as Special Assistant to the Director of theNational Cancer Institute.

BOAR MEMBERs, VICE pREsI EnTs AssUME nEw lEA ERsHIp ROlEs

Jeanne Ruesch

Terrence Meck

Jenny Isaacson

Lynn Matrisian, PhD


4/16

2Spring 2012

OUTREACH

Dr. Simeone received our Randy Pausch Family Pancreatic Cancer ActionNetwork AACR InnovativeGrant in 2010. She serves

as the Lazar J. Green eld Endowed Professor of Surgery and Physiology at the University of Michigan

and as the Director of itsPancreatic Tumor Program.In recognition of her

outstanding reputation, Dr. Simeone has routinely been listed among the Best Doctors of America, Best Surgeons in America, and Americas Top Doctors for Cancer. She was recently inducted into the Institute of Medicine, and she is aPast President of the Society of University Surgeons and the

American Pancreatic Association. She joined the PancreaticCancer Action Networks Scienti c Advisory Board in 2011.

As an undergraduate student at Brown University,Dr. Simeone majored in Neuroscience and enjoyed delvinginto various research projects in that area. During medicalschool at Duke University, when she focused her attention onsurgery, she chose gastrointestinal surgery because it oftenprovided an opportunity to go in there and x things, andmake an immediate impact on the quality of peoples lives,she said.

Unfortunately, surgery for pancreatic cancer is acomplex procedure that is not often curative for patients.We are de cient in our ability to improve outcomes, bothsurgically and scienti cally, for pancreatic cancer, she said.Consequently, she felt she could have the most impact intackling the disease by working in both the operating room

and the laboratory.Her research project, funded by the Pancreatic Cancer

Action Network Innovative Grant in honor of the RandyPausch family, involves a clinical trial targeting pancreaticcancer stem cells (CSCs), which are considered the most

aggressive cells within a tumor and often grow, resisttreatment, and spread, or metastasize, from the tumor toother organs.

After Dr. Simeone and her colleagues discovered CSCsin human pancreatic cancer, they found that the cells areparticularly dependent on protein signaling involving thedevelopmental pathway Notch. Notch signaling is ordinarilyonly active during the embryonic development of the pancreasand other organs, but absent from normal healthy adultcells. However, pancreatic CSCs reactivate Notch signaling,and require it for their growth and survival. Based on theseobservations, Dr. Simeone proposed developing a clinical trialto test a compound that blocks the activity of Notch.

She feels strongly that clinical trials should be based onrobust, rigorous preclinical data (laboratory experiments).Ideally, she would like to test potential drugs in mouse modelsfor pancreatic cancer, as well as human tissue samples ofthe disease, before using novel therapies to treat patients.She believes many drugs are tested in clinical trials withoutan adequate understanding of how they work and in whichsettings they might provide the most bene t. When her ownclinical trial was stalled by unexpected setbacks, she optedto use the time to produce even more compelling preclinicaldata supporting the effectiveness of Notch inhibition in thetreatment of pancreatic CSCs.

Dr. Simeone believes it is important to surround herselfwith a strong, diverse collaborative team of researchers.The best way to achieve success is to get lots of types ofinput and come at the problem from multiple angles such asclinical, basic science, and drug development, she said.

She encourages early career researchers to adoptthis strategy, ensuring that basic scientists team up withclinicians, and vice versa. The Pancreatic Cancer ActionNetwork does a phenomenal job convening and growing

an interactive research community, facilitating a greaterexchange of ideas, she said.

Dr. Simeone added that she is honored to be a part ofthe pancreatic cancer eld, and feels positive about thecommunitys ability to make progress in the next few years.

MEET A gRAnTEEIAnE sIMEOnE, M : TACKlIng pAnCREATIC CAnCER In

THE lABORATORy An THE ClInIC TO BEnEfIT pATIEnTs

We just need to give smart people the tools that they need to solve the problem(of pancreatic cancer).

Jai Pausch, National Board of Directors, Pancreatic Cancer Action Network

Diane Simeone, MD

Jai Pausch


5/16

Spring 2012OUTREACH

3

Since 2010, thePancreatic Cancer ActionNetwork has awardedPathway to Leadershipresearch grants to threehighly promising early-career scientists in thementored research phaseof their careers, enablingtheir transition toresearch independence.

Researchers applyfor this grant whilethey are working in thelaboratory of a professorserving as their mentor,and then they establishtheir own labs during the

second part of the funded period. This timeframe representsa critical moment in the career of a young scientist,transitioning to running his/her own lab and committing toa research focus. Excitingly, the recipient of the inauguralPathway to Leadership grant in 2010, Zeshaan Rasheed, MD,

PhD, was recently promoted to Assistant Professor at JohnsHopkins University.Jennifer Bailey, PhD, and E. Scott Seeley, MD, PhD,

received the grants in 2011. Dr. Bailey nished herundergraduate and graduate studies at the University ofNebraska. Dr. Seeley completed his undergraduate studies atthe University of Regina in Canada and Eastern ConnecticutState University, then completed a joint MD/PhD programat Dartmouth Medical School. Currently, Dr. Bailey is apostdoctoral fellow at Johns Hopkins University and Dr.Seeley is a research and clinical fellow at Stanford University.

Although a continent apart, these exceptional young

scientists tackle similar complex, biological questions in aneffort to better understand the initiation and progression ofpancreatic cancer. Both investigators have bene ted fromworking with exceptional mentors who have deep-rootedconnections to the pancreatic cancer community and ourorganization.

Dr. Bailey conducted her post-graduate studies inthe laboratory of Tony Hollingsworth, PhD, a member andformer chair of the organizations Scienti c Advisory Board.

Currently, she is co-mentored by Steven Leach, MD, and Anirban Maitra, MD, a recipient of a 2004 Career Development Award and a Scienti c Advisory Board member. Dr. Seeleyworks primarily with Max Nachury, PhD, the recipient of the2009 Larry Kwicinski Career Development Award.

It is a great testament to the success of our researchgrants program to see former recipients of early-careergrants in a position to mentor future leaders in the eld,said Pancreatic Cancer Action Network President and CEOJulie Fleshman.

Both Drs. Bailey and Seeley focus their research effortson protein signaling necessary for the growth and survivalof pancreatic cancer cells. Dr. Bailey studies the earliestcellular changes necessary to promote cancer formationby measuring the cells response to expression of mutantK-Ras. Since K-Ras is the most frequently mutated proteinin pancreatic tumors, she plans to use a novel mousemodel to monitor the precise moment when mutant K-Rasis rst expressed and observe resulting cellular changes.The ability to witness and potentially intervene in theseextremely early events could have strong implications inthe development of better methods to detect and treatpancreatic cancer.

Dr. Seeley examines the regulation of cellular proteinlocalization and how this mechanism can impact the growth,movement and survival of cancer cells. For proper cellularsignaling to occur, proteins need to be in the right place atthe right time. Because of a tightly regulated process, apotential therapeutic strategy could interfere with cellularlocalization of critical proteins, leading to improperly located,nonfunctional proteins.

These types of creative studies delving into the biologyof pancreatic cancer will serve as the foundation for futureclinical trials leading to novel treatment and diagnosis options.Passionate, bright young scientists like Drs. Rasheed, Bailey

and Seeley will be on the frontlines ghting this disease andadvancing research for years to come.

In addition to providing critical research funding,the Pancreatic Cancer Action Network offers early-careergrantees like them networking opportunities, allowing themto share ideas and progress and gain insight from expertsin the eld. Such collaborations represent an importantcomponent towards building a comprehensive pancreaticcancer research community.

TwO "BAsIC" sCIEnTIsTs pURsUE gOAlOf IMpROVIng ClInICAl OUTCOMEs

Drs. Bailey and Seeley receive our Pathway to Leadership awards at the 2011 American Association for Cancer Research Annual Meetingon April 5, 2011.


6/16

4Spring 2012

OUTREACH

Modern clinical trials are designed to test novel drugs andcombinations of drugs based on carefully evaluated scienti cdata generated in the laboratory. Better disease models forpancreatic cancer and a deeper understanding of the basicbiology have led to the development of many promisingclinical trials for pancreatic cancer. (For an example of such atrial, please see the story about Dr. Diane Simeones researchon page 2.) Another type of treatment option based on workin the laboratory is a family of drugs formulated to target aprotein signaling pathway called hedgehog. To read a storyabout a patient under treatment with this type of compound,please see page 8.

When the research of Scienti c Advisory Board ChairDave Tuveson, MD, PhD was funded by his PancreaticCancer Action Network Career Development Award in 2003,he developed the rst mouse model of pancreatic cancer thatmimics the progression of human disease.

Previous experiments in the laboratory revealed themost commonly mutated genes in pancreatic cancer. Dr.Tuveson genetically engineered his mouse model so that itwould be born with these mutations occurring speci callyin the pancreas. Over time, the engineered mice developedpancreatic cancer, and showed weak responsiveness to thechemotherapeutic drug gemcitabine, the standard of care

for pancreatic cancer patients. The results mirrored humanpatients poor response rate to the drug.

Further analyses by Ken Olive, PhD (recipient of our2011 Career Development Award funded by Tempur-PedicRetailers), conducted when he worked as a postdoctoral fellowwith Dr. Tuveson, showed that the dense microenvironmentsurrounding the pancreatic tumor contributed to the resistanceof the mice to gemcitabine. In fact, the microenvironmentwas so thick and impenetrable that the drug could not evenmake it to the cancer cells themselves.

When Drs. Olive, Tuveson and their colleagues looked

more carefully at the individual cells comprising themicroenvironment, they found that a cell signaling pathwaycalled hedgehog was abnormally activated. Hedgehogsignaling is known to play an important role in the embryonicdevelopment of the pancreas and other organs, but is notsupposed to be active in healthy adult cells.

Because of this observation, clinical trials are currentlyunderway to test the combination of novel inhibitors of thehedgehog signaling pathway with other treatment options.

Although early results with the rst hedgehog inhibitor to betested in pancreatic cancer patients were disappointing, otherdrugs are in trial to further examine this therapeutic strategy.The hope is that the hedgehog inhibition will break down someof the dense microenvironment surrounding the cancer cells,leaving them vulnerable to attack by chemotherapeutic drugs.

In this example, a clinical observation (that pancreaticcancer patients respond poorly to the chemotherapy druggemcitabine) was recreated in an accurate mouse modelof the disease. The mouse model provided insight intoa potential mechanism for drug resistance (that the drugwas not getting to the tumor), and analyses of the tissuespecimens in the laboratory revealed activation of a pathwaythat can be therapeutically targeted. Together, these medicaland scienti c ndings have led to a promising, strategic

treatment option for one of the most dif cult cancers to treat.Numerous other examples abound of elegant laboratory workinforming the design and implementation of novel clinicaltrials aimed at treating pancreatic cancer. The PancreaticCancer Action Network encourages all patients to considerclinical trials when exploring treatment options.

Without clinical trials, patients will not have access tocutting-edge research and new and better treatment optionsfor pancreatic cancer will not be developed. Encouragingpatient participation in pancreatic cancer clinical trials is anextremely important part of the research process.

fROM CElls TO MICE TO HUMAns:HOw lABORATORy REsEARCH TRAnslATEs TO pATIEnT BEnEfIT THROUgH InnOVATIVE ClInICAl TRIAls

pAnCREATIC CAnCER spECIAl COnfEREnCE sET fOR JUnE 2012The American Association or Cancer Research (AACR) Pancreatic Cancer Special Con erence will take place romJune 18 to 21, 2012 in Lake Tahoe, Nevada.

The Pancreatic Cancer Action Network will proudly serve as the lead sponsor o the event and work with the AACR too er an inaugural special con erence completely ocused on pancreatic cancer. Scientists and physician/scientistsat various stages o their careers will have the opportunity to interact with experts in the feld, ostering in ormation-sharing, collaboration, and increased attention regarding the disease.

To learn more, go to www.pancan.org/AACRcon erence


7/16

Spring 2012OUTREACH

5

In addition to ensuring passageof the Pancreatic Cancer Research & Education Act andpromoting awareness of thedisease among governmentof cials, the Pancreatic Cancer

Action Network helps representthe interests of pancreatic cancer patients in other ways.These include striving to ensure patients have access toclinical trials and working with government agencies likethe Food and Drug Administration (FDA), the federal agency

responsible for approving new drugs and medical devices.The FDA uses guidances to tell manufacturers and

other members of the drug and device industries what theagency expects in order for their drugs and (medical) devicesto become approved. Recently, the Pancreatic Cancer ActionNetwork submitted comments to the FDA to provide input onits draft guidance entitled, In Vitro Companion DiagnosticDevices.

In its draft guidance on which it sought comments, theFDA took the position that when manufacturers request FDA approval for a drug that is used in conjunction with a diagnostic

device, both the drug and the device must be approved at thesame time. As an example, certain drugs are effective onlyin people whose tumors have a speci c biomarker, such ascrizotinib (Xalkori), a drug that was approved in 2011 for non-small-cell lung cancer. Researchers know this medication islikely to be effective only in people who have rearrangementsin the anaplastic lymphoma kinase (ALK) gene. Under thedraft guidance, if the FDA was considering approval of Xalkoritoday, a diagnostic device testing for the ALK gene wouldhave to be approved at the same time.

The draft guidance is important for pancreatic cancer

because it included a critical exception for drugs used totreat serious or life-threatening conditions for which thereare no other good treatment options. Pancreatic cancer isclassi ed as such a condition because of its ve-year relativesurvival rate of just 6 percent and lack of effective treatments.Drugs or therapies developed to treat pancreatic cancer inconjunction with a diagnostic device or test can be exemptfrom this requirement and thus may come to market sooner.The Pancreatic Cancer Action Network submitted commentsto the FDA strongly supporting this exception. To read ourcomments, visit www.pancan.org/FDAcomments .

A VOCACy EffORTs EXTEn

BEyOn BIll pAssAgE

REgIsTER TO Ay fOR THE sIXTH AnnUAlpAnCREATIC CAnCER A VOCACy Ay Join hundreds o your ellow pancreatic cancer advocates rom across thecountry on June 25 and 26, 2012, in Washington, D.C. or the sixth annualPancreatic Cancer Advocacy Day. During the event, participants will meet withtheir members o Congress to share their stories about how the disease hasimpacted their lives and to push or passage o the Pancreatic Cancer Research& Education Act . Comprehensive training is provided, so no previous advocacy

experience is necessary. The only requirement is enthusiasm about educatingelected o fcials about pancreatic cancer, the organization, and the need ormore ederal unding or pancreatic cancer research.

To register or the event, go to www.pancan.org/AD2012. Since Advocacy Day is a very popular event and space is limited, early registration is encouraged.Registration will close on May 11, 2012, or whenever capacity is reached.

Advocacy Day was emotional and inspirational, yet energizing for me. It wascomforting to meet people who share a similar personal experience and passion for creating much-needed awareness for pancreatic cancer. I am very grateful for havinghad the opportunity to participate in such a tremendous event!

-Diane Dudash-Dykes, Jacksonville, FL, 2011 Advocacy Day participant

pAnCREATIC CAnCER REsEARCH & EdUCATIOn

ACT Up ATEWe are excited to announce that throughthe dedication and persistence o ourgrassroots advocates, we have nowsecured the support o more than hal o theU.S. House (220 representatives) and nearly

hal o the U.S. Senate (43 senators) or thePancreatic Cancer Research & Education

Act (S. 362/H.R. 733)! To check i yourmembers o Congress have co-sponsoredthe bill, go to www.pancan.org/senateand www.pancan.org/house. Now that wehave reached this important milestone, weare pushing Congress to pass the bill outo the relevant committees and to bring itto the Senate and House oors or a vote.Please help us by attending Advocacy Day in June and by participating in advocacy-

related action alerts!


8/16

6Spring 2012

OUTREACH

pARTICIpATIOn In A pAnCREATIC CAnCEClInICAl TRIAl MAy BE RIgHT fOR yOUConducting clinical trials is critical to advancing progress inthe ght against pancreatic cancer. Clinical trials are the onlyway for researchers to determine if new treatments are aseffective and safe or better than current approved regimensfor treating diseases like pancreatic cancer. Additionally,clinical trials provide patients with the opportunity to receivea promising drug or treatment.

By participating in an appropriate clinical trial, patients canhave a positive impact on their own treatment and help speedscienti c progress toward therapeutic breakthroughs forthose who have yet to be diagnosed. In effect, enrolling inclinical trials is one of most signi cant ways patients can take

an active role in advancing vital medical research in additionto helping themselves.

Michael Donnelly, a 71-year-oldfather of three and grandfatherof ve who lives in Pen eld,NY, knows rsthand aboutthe bene ts of participating ina trial. He entered one only afew months after his pancreaticcancer diagnosis in 2003.Even after surgery, I knew Iwas facing a dif cult disease,

and my doctor told me that the best option for me was aninvestigational treatment through a clinical trial, he said.Today, almost eight years later, Michael is working as a seniorexecutive for a not-for-pro t organization, enjoying golf,traveling and volunteering in his community.

Since every patients experience in a clinical trial will bedifferent, anyone considering participating in one shouldcarefully evaluate his or her options. Participants need to beinformed and learn all they can about the trials so that theyfeel comfortable with their decision to enroll.

THE ECIsIOn TO pARTICIpATESue Kocis, a 55-year-old forest ranger from Sterling Heights,MI, knew she needed to research her trial thoroughly beforemaking a decision. I narrowed my search down to two trials,interviewed the clinical trial coordinator and the study doctors,then made my choice, she said. The trial coordinator isvery dedicated and coordinates all my treatments, so I feelwell cared for.

After two months of participating in the trial, Sue is stillexcited to be part of it. I close my eyes now and imaginethe trial drugs and standard-of-care drugs working through

my body to eradicate anyremaining cancer and zap it,she said. Its reassuring.

Clinical trials may offer manypotential bene ts and patientsparticipate for a variety ofreasons. Some hope that thetreatment they will receive willbe better than the standardtreatment that is available. Patients may also be motivatedby the opportunity to receive care from the top doctors andresearchers who conduct trials at leading healthcare facilities

nationwide.

OffERIng HOpE A 70-year-old grandfatherand architect who residesin Jacksonville, OR, PhilipSchwimmer has been part ofa trial since he was diagnosedwith metastatic pancreaticcancer in 2010. In my case,being part of a clinical trialhas shown me the differencebetween thinking outside of

the box in terms of patient care and treatment, and acceptingwhat was essentially a hopeless diagnosis, he said. My trialgave me the hope I needed to face my fears.

Sue was also motivated by the possibility of a brighter future. Iknew I wanted to participate in a clinical trial because standardtreatments still offer slim hope of a cure for me, she added.By participating, I feel like I bought insurance and now havemore hope that one of these days a cure can be found.

TAKIng A lOOK AT sI E EffECTsSome patients are hesitant to participate in a trial because ofconcerns about possible side effects from an experimental

treatment. However, all treatments may cause side effects.Therefore, choosing the standard treatment instead of aclinical trial does not mean there will be no side effects. Ineither case, the degree to which a patient experiences themcan range from mild to severe.

My trial coordinator reviewed the possible expected sideeffects with me and some have occurred, said Sue, whoseown side effects have been mild. Since I was prepared,though, I am able to deal with the little inconveniences.

(continued on next page)

Michael Donnelly Philip Schwimmer

Sue Kocis


9/16

Spring 2012OUTREACH

7

In most cases, side effects are successfully managed with thehelp of the multidisciplinary team of healthcare professionalswho often work on clinical trials, including physicians,nurses, social workers and dietitians. The treatment I gotwas aggressive, and I did suffer from a number of sideeffects, Michael said. But throughout the trial, 10 or 11different people, including specialists from different areas,were evaluating me and helping me deal with them.

InfORME COnsEnTPatients may also be concerned about their rights whenparticipating in a clinical trial. One of the most importantgoals of those who conduct such trials is protecting patientsrights. To ensure the well-being of all participants, a uniqueaction plan called a protocol is used in each trial. The protocolensures that the study is justi ed, safe for participants, anddesigned to answer research questions. A key component ofprotocols is informed consent.

Informed consent ensures patients receive completeinformation about a clinical trial prior to their participation

so that they understand their role and rights. During his owntrial, Philip found informed consent reassuring.

During the enrollment process, I was told that if I changedmy mind, or if I felt the quality of my life was compromised bythe treatment, I could quit, he said. Since I started the trial, Ihave lived for 13 months as opposed to the three months myphysician initially gave me. If I had chosen standard cancertreatment for this disease, I might not be around.

The Pancreatic Cancer Action Network understands theimportance of clinical trials in the development of newtreatment options for pancreatic cancer and encourages allpatients to explore them when considering treatment options.Clinical trials are the only way to nd more effective therapiesto treat the disease.

We can help you fnd a clinical trial that may be right or you. To learn more, contact a PALS Associate toll- ree at877-272-6226 or email [email protected].

Palliative care focuses on comfort, quality of life and asurvivors total well-being during and after cancer- ghtingtreatments. Palliative care is meant to relieve the symptoms

and side effects at any stage of living with cancer or otherserious illnesses. Such care should be provided throughoutthe pancreatic cancer journey and can accompany cancer-

ghting treatments.Misunderstandings about the meaning of palliative care

create a common challenge. Many people, including somehealthcare professionals, think that palliative care is only givento people nearing the end of their lives. However, palliativecare is appropriate at any time, regardless of prognosis.Pancreatic cancer survivors may experience pain, fatigueand other side effects that reduce their quality of life and theyshould ask for help. Survivors deserve to get the palliative

care they need throughout their journey.Survivors should look to palliative care as a way to feel the

very best that they can in every area of their lives. Survivors

and their loved ones will be best equipped to deal with thechallenges of their pancreatic cancer journey when theirphysical well-being and emotional attitude are strong. Totalwell-being enhances the quality of life of each survivor andshould be considered by all members of the healthcare team.

The Pancreatic Cancer Action Networks Patientand Liaison Services (PALS) recently published a booklettitled, Palliative Care: Quality o Li e and Practical Care in Pancreatic Cancer. To receive a ree copy o thisbooklet, or or help locating palliative care services,contact a PALS Associate toll- ree at 877-272-6226 oremail [email protected].

pAllIATIVE CARE: EnHAnCIng QUAlITy-Of-lIfE An A MInIsTERIng pRACTICAl CARE

ClInICAl TRIAls: A VITAl sTEp In MAKIng pROgREssThe Pancreatic Cancer Action Network recommends that all patients consider clinical trials when exploring treatment options.

The Pancreatic Cancer Action Networks Patient and Liaison Services (PALS) program maintains a comprehensive database

containing up-to-date in ormation about pancreatic cancer clinical trials taking place throughout the United States. For

a personalized clinical trials search or or other questions related to clinical trials, contact a PALS Associate toll- ree at

877-272-6226 or email [email protected]. PALS Associates are available Monday-Friday, 7am-5pm Pacifc Time.


10/16

8Spring 2012

OUTREACH

In March 2011, I was diagnosed with metastatic pancreaticadenocarcinoma. As youre reading this story in Outreach ,you are already familiar with most of what I could sharebecause it follows the same path of so many other storiesthat have appeared in this magazine. Its a tale of fear, despair,hope, progress, setbacks and a never-ending ght. As I writethis column, just before Christmas of 2011, Ive been throughall of that and Im still in the middle of it. The fact that I amstill in the middle of my pancreatic cancer journey is the partof my story that I want to share now.

After unsuccessful surgery in April to resect the tumor, mywife and I began a search for new ways to ght it. We werentgoing to stop just because I still had cancer. Thankfully, Ihad built up a wonderful support circle of friends, family andcancer survivors who wouldnt let me quit, either. We beganto explore clinical trials as an option.

We knew, with the dim prognosis I was given, that timewas of the essence, but we made sure we found somethingthat promised hope. Not just hope for me, and maybe notfor me at all, but hope for the untold thousands who wouldfollow me in this experience.

After a couple of weeks of searching, we found a clinical

trial using a drug known as hedgehog inhibitor that was

just opening up. In fact, I was the rst patient in the trialin my area. (To learn more about this therapeutic strategy,please see the story on page 4.) In June, I started the trial.The regimen was daily oral medication combined with regularchemotherapy one day a week, three weeks out of four.I have not experienced any real side effects from the trial,except for increased fatigue following the chemo sessions,which would probably be happening whether I was takingthe test drug or not. I am pain free, with no nausea or othersymptoms. I have a great appetite, remain in good spirits andstay as active as I was before the diagnosis.

The results have been encouraging, to put it mildly.

Now I dont know, and neither does my oncologist, whetheror not the trial drug is responsible. Neither of us know if Iam getting the experimental drug or if I am getting standardtreatment with a placebo (which is the same as receivingonly the standard treatment). It could be the experimentaldrug. It could be the regular chemotherapy. It also could bethe aggressively positive attitude I maintain with the supportof my wife and friends. It could be the result of the prayercircles around the world who keep me in their thoughts.

It could be, and Im betting it is, a combination of allthat, but the result is really what matters. The cancer hasnot spread or grown since I started the trial. I am now wellpast the initial dire prognosis they gave me in March. As aresult, I saw my daughter get married this past Septemberand held my rst grandson, Charlie. Thats me with Charliein the picture.

People say that when life hands you a lemon, makelemonade. Thats usually good advice, but it wasnt goingto work for me in beating my cancer. I needed more thanlemonade, and the clinical trial gave me an opportunity to ndmore. Sometimes, even when life hands you a lemon, you haveto keep looking for the champagne grapes. I did. And becauseI did, I can raise a toast to my fellow cancer survivors.

A sTORy Of HOpE An InspIRATIOnBy Fred Wilhelms, Nashville, Tennessee

Fred Wilhelms with his rst grandson, Charlie

PATIENT AND LIAISON SERVICES (PALS)PALS offers comprehensive, high-quality information and resources to patients and families facingpancreatic cancer, including information about the disease, treatments, clinical trials, side effect andsymptom management, diet and nutrition, and support resources. Contact a PALS Associate to answeryour questions, receive personalized pancreatic cancer information or a free educational packet.

El programa de PALS esta disponible en espaol.

Patient and Liaison Services (PALS)Monday - Friday, 7am - 5pm Pacifc Time

Toll- ree: 877-272-6226 | Email: [email protected]


11/16

Spring 2012OUTREACH

9

At a recent Education & Outreach volunteer committeemeeting of the Pancreatic Cancer Action Network Twin Cities

Af liate, Teri Larsonwas discussing theneed to raise awarenessabout clinical trialswhen a pancreaticcancer survivor voiceda concern.

He said he hadbeaten pancreaticcancer because hehad received a provencourse of treatmentand he would hesitateto suggest that patientspursue anything else,

Teri, the Twin Cities Education & Outreach Coordinator, recalls.Then a remarkable thing happened. Fellow survivor

Brenda Coleman quickly chimed in with a comment of herown: Part of the reason you received that course of treatmentwas because of a clinical trial I participated in nine years agothat changed the standard of care, she said. Her commentsemphasize the extremely important role of enrolling in clinicaltrials.

It was a memorable moment, but one of many for Teri.In her role as coordinator, Teri hears from survivors in manyvenues. In addition to regularly hosting information tablesat health fairs and conferences, she meets one-on-one withhealthcare providers to share information about resourcessuch as the Patient and Liaison Services (PALS) program, theSurvivor and Caregiver Network and personalized searchesfor clinical trials.

Like many Education & Outreach Coordinators, Teridoes not have a formal medical background. However, she

did witness the progression of pancreatic cancer that tookher mother in 2007; Teri herself is a survivor of Stage IVlymphoma. As a volunteer, she was initially hesitant aboutmeeting with healthcare professionals but quickly overcameany uncertainty.

One of my favorite things to do is to go into hospitalsand clinics and talk to them about the organization, she said.Healthcare professionals are so receptive. Theyve had solittle to offer their patients for pancreatic cancer and we arehelping them provide hope.

Emily Tedone, Education & Outreach Coordinator forthe Phoenix Af liate, recently gave a presentation aboutthe organization to the Society of Gastroenterology Nurses

Association regional meeting. Afterward, 200 nurses justswarmed our information table! They were so grateful to

nally have resources to direct their patients to, she said.Up until then, they hadnt been doing much, because theyfelt there was nothing they could do.

Emily lost her father to pancreatic cancer in 2008, butit wasnt until 2009 that she began volunteering with herlocal af liate. I thought that once he passed, things wouldbecome easier, but it wasnt until I began putting energy intothe organization that I started to heal, she said. Lookingback now, I realize how much volunteering helped me. Theorganization is so professional and supportive in how theytreat their volunteers. I know if my dad had survived, hewould have been involved, which makes it easier to knowthis is what I should be doing.

Both Teri and Emily work full-time. Initially, their volunteerefforts required some juggling, but Emily, who overseesa committee of 15 Education & Outreach volunteers inPhoenix, shared that one of her most successful volunteers isa mom who cant often make it to monthly af liate meetingsbut frequently is out in the community talking with doctorsand nurses.

Teri agrees.One of the mostimportant thingswe can do is justto be there. Weprovide a sense ofcommunity to helppatients and theirfamilies know theyare not alone. It can

be hard; there aretoo many peoplewith this diagnosis,but that can be motivating as well. I feel we are making adifference. I want to be part of this effort and this organizationwhen we make that breakthrough; you can feel it coming,she said.

Thanks to the work of Teri, Emily and volunteersnationwide, that momentum is palpable. To learn how you canbecome involved locally, visit www.pancan.org/volunteer .

VOlUnTEERIng fOR OUTREACH TO THE HEAlTHCARE COMMUnITy

Teri Larson, Education & OutreachCoordinator for the Twin Cities

Af liate, with her husband at an Awareness Night with the MinnesotaTwins event, where she hosted a

pancreatic cancer information table

Emily Tedone (left), Education &Outreach Coordinator for the Phoenix

Af liate, at Advocacy Day 2011 with her mother, Maria


12/16

10Spring 2012

OUTREACH

Manhattan provideda picture-perfectbackdrop for theinaugural INGNew York CityTEAMHOPE NationalMarathon Team lastNovember, whennearly 50 membersran in support ofthe mission of the

Pancreatic Cancer Action Network. Inspired in part by teamcaptain and New York Yankee pitcher David Robertson,participants raised more than $231,000.

The ING New York City TEAMHOPE National MarathonTeam comprised individuals of all different skill levels andbackgrounds who shared a common goal: to end pancreaticcancer. Several runners also joined the effort as part of the

TEAMHOPE Individual Program.It was a great experience. David's guiding light was

truly working overtime that day, said team member SharonWong-Lew. If you ever choose to do one marathon in yourlifetime, New York is the one! Its even better to run it to raisemoney for your favorite charity!

Beginning as a grassroots effort in 2004, TEAMHOPEexpanded into a National Marathon Team in 2008. In 2010,the Individual Program was added, offering exibility infund-raising goals and bene ts, and providing runners andwalkers around the country with a way to participate in therace of their choosing, whether its a local 5K or a destinationmarathon with a team of family and friends.

Since its inception, TEAMHOPE has grossed more than$1 million to advance research, support patients and createhope for the pancreatic cancer community. For race ideasand to learn more, visit www.iamteamhope.org and clickLearn More about our Individual Program.

InAUgURAl Ing nEw yORK CITy TEAMHOpE nATIOnAlMARATHOn TEAM MAKEs spECTACUlAR EBUT

Barbara Hannah-Grufferman, proud member of TEAMHOPE and New York Marathon nisher

One of the mostinspiring stories tocome out of the

2011 PurpleStrideseason is that ofWendy Keil, herhusband, Gordon,and her children,

Adam, Sarah,Heather and Noah.Wendy, a breastcancer survivor, had

participated in many fundraising walks, but when she wasdiagnosed with pancreatic cancer in December 2010, sheand her family became involved on a whole new level.

Wendy had witnessed a close family friend pass awayfrom pancreatic cancer, and she knew she was in for a ght,but she wanted her struggle to have an impact beyond herown experience.

When Wendy's daughter Heather suggested that theyparticipate in PurpleStride Manhattan 2011, Wendy beganmaking calls. My mother always had a sel ess way of doingthings, Adam said. She felt that whatever happened to herwas going to happen, but she wanted to do everything withinher power to make sure others in the future wouldnt have toendure the same suffering that she was experiencing. When

youre passionate about a cause, its easy to ask people fortheir support.

The familys effort grew into a team of 130 supporters,

who raised more than $72,000 for the event. Not content tostop after PurpleStride Manhattan, the Keil family immediatelyset their sights on forming a team for the PurpleStride walksin Cleveland and New Jersey.

Although Wendys health declined over the summer, herspirit remained vibrant. It was clear we didnt have a lot oftime left, Heather said. But she was personally involved upuntil the end. She even went to a cancer support group atthe hospital to recruit people for the walk. Sadly, Wendy losther battle in September 2011, but her family and friends wenton to raise more than $100,000 at PurpleStride New Jersey,bringing the full year total to almost $200,000.

However, the Keil family considers this just the beginning.Without a lot of planning, we had Walking for Wendy

teams at PurpleStride Cleveland, South Florida and Houstonthis year, Adam said. Weve already looked at the calendarfor 2012. We know people all over the country. We areplanning to have at least 20 teams at next years events.

My mom would say to us, this isnt a club anyone wantsto join, but now that we are here we need to have an impact,remembers Sarah. Thats what we intend to do.

To learn more about forming a team for an upcomingPurpleStride, visit www.purplestride.org .

TEAM wAlKIng fOR wEn y TAKEs On THE COUnTRy

Team Walking for Wendy (here at PurpleStride New Jersey 2011) also had

participants in PurpleStride Manhattan,Cleveland, South Florida and Houston,

raising more than $200,000.


13/16

Spring 2012OUTREACH

11

UpCOMIng pURplEsTRI E EVEnTsPurpleStride undraising and awareness walks and races help support the fght against pancreatic cancer. Dates listed re ect events scheduled rom February 1 to June 30, 2012; however, new events are added requently. Visit www.purplestride.org or more in ormation on all 2012 PurpleStrides.

2/11/2012 PurpleStride Phoenix4/21/2012 PurpleStride Kansas City4/21/2012 PurpleStride New York City4/28/2012 PurpleStride Chicago5/6/2012 PurpleStride Rhode Island5/12/2012 PurpleStride Los Angeles6/2/2012 PurpleStride Milwaukee6/9/2012 PurpleStride Omaha6/9/2012 PurpleStride Indianapolis6/9/2012 Walk Through the Vineyards (Napa, CA)

6/16/2012 PurpleStride Cleveland6/16/2012 PurpleStride Scranton (PA)6/16/2012 PurpleStride Washington, DC6/24/2012 PurpleStride DenverDate pending PurpleStride OklahomaDate pending PurpleStride Connecticut

A ITIOnAl spRIng EVEnTsVolunteers also host additional awareness events, undraisers and volunteer meetings. Find one below or visit www.pancan.org/events or a complete list. New events are added every week!

2/4/2012 Awareness Night with the Missouri Mavericks2/5/2012 Kaiser Permanente San Francisco Half Marathon & 5K Run2/25/2012 Awareness Night with the Texas Stars3/10/2012 Awareness Night with the Worcester Sharks (MA)3/16/2012 Awareness Night with the Los Angeles Lakers4/28/2012 PurpleLinks San Antonio5/1/2012 Awareness Night with the Cincinnati Reds5/7/2012 PurpleLinks Atlanta5/31/2012 Awareness Night with the New Orleans Zephyrs6/4/2012 PurpleLinks Detroit6/9/2012 6th Annual Celebration of Hope, Seattle

For information on these and other events including local volunteer meetings, visit www.pancan.org/events .

PurpleLight Los Angeles, one of more than50 held around the country in fall 2011

PurpleStride Savannah 2011

Survivor Ken Wardstrom (back row, center) a top fundraiser at PurpleStride Puget Sound 2011, surrounded by his team of family and friends

Volunteers Michelle Romanick (left) and Elena Piexoto celebrate at the end of a

successful PurpleStride Portland 2011.

UpCOMIng E UCATIOnAl OppORTUnITIEsLearn about pancreatic cancer rom experts in the feld by attending one o our upcoming educational programs.

We will also be hosting several Educational Lectures throughout the country this Spring.

for u -to-date i ormatio a d to re i ter, vi it . a ca .or .

pAnCREATIC CAnCER syMpOsIA: wAsHIngTOn, C sATUR Ay, MARCH 10 | sAn fRAnCIsCO BAy AREA fRI Ay, MAy 11


14/16

12Spring 2012

OUTREACH

CUlInARy MAsTERs COnVERgE AT 14TH AnnUAl An EVEnIng wITH THE sTARs gAlA,

HElpIng RAIsE MORE THAn $1 MIllIOnBy his own admission,Matt Bencivenga,Chef and ManagingPartner at WolfgangPuck Catering, feelsmost at ease workingtenaciously in a busykitchen. However,the reserved culinaryprofessional foundhimself on centerstage on October22, 2011, when hewas honored with thePancreatic Cancer

Action Networksprestigious Spirit of

Hope Award at the 14th annual An Evening with the Starsgala, held at the Beverly Wilshire Hotel in Beverly Hills, Calif.

Renowned food industry legend Wolfgang Puck,actor Mindy Kaling from the hit television series The

Of ce, Pancreatic Cancer

Action Network NationalSpokesperson Lisa NiemiSwayze, widow of MichaelLandon and long-timesupporter Cindy Landon,actor/producer and Academyof Motion Picture Arts andSciences President TomSherak, and a multitudeof Matts colleagues fromWolfgang Puck Catering wereamong the more than 600

Pancreatic Cancer ActionNetwork supporters joining his family members and friendsfor the special evening.

Before presenting Matt with his award, Wolfgang sharedamusing anecdotes about working alongside his longtimefriend and business partner and professed his admiration forthe work ethic as well as the good humor and bravery heshowed as he faced his pancreatic cancer diagnosis.

Capping thememorable eveningwas a rousing andupbeat performanceby legendaryrockabilly artist ChrisIsaak, whose bandmoved many galaattendees to dancingin the aisles of thehotels ballroom.

The inspirational gala grossed more than $1 million,which will be used to fund critical programs and researchprojects for the pancreatic cancer community.

This year, we were extremely pleased to honor Matt,who helped to make thisyears gala a tremendous

success, said JulieFleshman, President andCEO of the PancreaticCancer Action Network.The funds raised this yearwill enable us to help tensof thousands of peopleaffected by the disease,as well as bring us closerto our goal of doubling thepancreatic cancer survivalrate by 2020.

Mark your calendar now for the 15th annual An Eveningwith the Stars gala, which will be held on October 20, 2012,again at the Beverly Wilshire Hotel.

Matt Bencivenga and Wolfgang Puck at the An Evening with the Stars gala

Matt and Sarah Bencivenga

Mindy Kaling

Chris Issak (right) and a bandmate perform at the gala.

A wonder ul way to pay ongoingtribute to your loved one while raisingawareness and unding or the fghtagainst pancreatic cancer.

www.keepthememoryalive.net

kEEP ThE mEmORy ALIVE CREATE A lEgACy gIfT A legacy gi t ensures that your estate willbeneft countless lives a ected by pancreaticcancer. To learn more about creating abequest, or other planned-giving options,please contact Pamela Acosta Marquardt [email protected] or at 877-272-6226.


15/16

Spring 2012OUTREACH

13

TEMpUR-pE IC HUgs BACK gIVIng sURpAssEs $1 MIllIOnTempur-Pedic InternationalInc. continues to lead theway for Pancreatic Cancer

Action Networks corporate

champions, having raised morethan $1 million to date for thecause since the inception ofthe Tempur-Pedic Hugs Backprogram in 2009.

As part of the 2011program, Tempur-Pedic hostedits second annual NovemberRest Test campaign, whichgenerated a $10 donation for

the organization for every consumer who tested a Tempur-Pedic mattress at a participating authorized retailer. Thanksin part to campaign support by the organizations volunteers

nationwide, the promotion was hugely successful.The number of validated Rest Tests taken by consumersthis year grew by more than 50 percent. Due to the campaign's

success, Tempur-Pedic will conduct an expanded version ofthe campaign in 2012.

Tempur-Pedic is a forerunner in the corporatecommunity in the ght against pancreatic cancer, said Julie

Fleshman, Pancreatic Cancer Action Network President andCEO. With their generous contributions, the company hasmade a bold investment in our goal to double the survival ratefor pancreatic cancer by 2020.

We are pleased to fund another Pancreatic Cancer Action Network research grant to move us closer to improvingthe survival rate and ultimately nding a cure," explained Rick

Anderson, President of Tempur-Pedic North America, LLC."We fully support the organizations comprehensive approachto combating this insidious disease. To that end, we arethrilled that with this years award, weve been able to showour commitment to that approach by completing our supportof the entire suite of research grants currently offered.

Monies raised throughout the year through Tempur-Pedicsefforts will fund a 2012 Tempur-Pedic Retailers PancreaticCancer Action Network AACR Innovative Grant.

HOnORIng A CHERIsHE fATHERs lAsT wIsHNick Friedmanns fund-raising efforts inmemory of his father, Roberto BobbyFriedmann, PhD, who passed frompancreatic cancer in September 2011 atage 58, have surpassed even his ownexpectations. A Keep the Memory Alivepage ( www.fght4bobby.org ) Nick

created to support a Named LegacyFund in his dads honor has raisednearly $44,000 to date, placing it among

the organizations most successful pages.The outpouring of support from Dr. Friedmanns friends,

colleagues and students at the University of Georgia, wherehe served as an educator for nearly 27 years, illustrates howbeloved he was to all those who knew him.

Born in Montevideo, Uruguay, the elder Friedmann gotthe nickname Bobby at age 5 while attending an Englishpreparatory school in his hometown. The moniker stuck evenafter he arrived in the U.S. in 1973 to attend the Universityof Kansas, where he earned a Bachelor of Science degree

in Business and Economics, an MBA, and then a PhD inMarketing. In 1984, he was hired as an Assistant Professor ofMarketing at the University of Georgia, where he eventuallyearned tenure as an Associate Professor.

In addition to individual donors, Nick credits localbusinesses in Athens and the University of Georgia ascontributors to his fund-raising success. On November21, 2011, he raised nearly $9,000 through a bene t dinnerand silent auction hosted by Athens's Taqueria La Parrillarestaurant. Donations of auction items from local businessesand franchises of national companies, including OutbackSteakhouse and Chick- l-A, boosted contributions.

A memorial service held at the University of GeorgiasPerforming Arts Center, planned by Dr. Friedmann himself,helped as well. At the memorial, we set up a guest table withPancreatic Cancer Action Network materials, said Nick, whomanages a retail bank branch in Washington, D.C. Becauseof widespread support we received from the universitycommunity, many opportunities were created for faculty, staffand students to donate.

Nicks mother, Liliana Jaso-Friedmann, PhD, a professorin the universitys Department of Infectious Diseases, hasbeen another major donor and supporter. My mom, who is a10-year breast cancer survivor, writes grant proposals to fundher own research, Nick said. She has also reviewed grants forthe National Science Foundation, the USDA and the NationalInstitutes of Health, so she is keenly aware of the importanceof federal funding to advance biomedical knowledge.

The family plans to continue their fund-raising efforts,including providing sponsorship for the 2012 PurpleStrideD.C. Nick has also been working closely with the Government

Affairs & Advocacy Of ce to help build support in Congress

for the Pancreatic Cancer Research & Education Act. He willattend Advocacy Day in June as well.The idea of supporting the Pancreatic Cancer Action

Network occurred to the family when Dr. Friedmann wasundergoing treatment at MD Anderson Cancer Center. Later,when Dad was in hospice, he helped us choose it as thecharity he wanted us to support. He was really impressedwith both the mission and reputation, Nick said.

Our family took this on to deal with our emotions abouthis death and to make a real impact in ghting the diseasethat took his life, he added. We are proud to have helpedful ll one of his nal wishes.

From left, Mark A. Sarvary, Pres- ident and CEO, Tempur-PedicInternational; Pancreatic Cancer

Action Network President and CEO Julie Fleshman and Rick

Anderson, President, Tempur-Pedic, North America, Inc.

Roberto "Bobby"Friedman, PhD


16/16

Honors the Pancreatic Cancer Action Network as ranking in the top ten of outstanding cancer charities.

Non-Pro t OrgUS PostagePAIDTorrance, CA Permit No.473

1500 Rosecrans Ave., Ste 200, Manhattan Beach, CA 90266

TO COnTACT UsIf your address is incorrect, or you are receiving duplicate copof this publication, you may submit changes in one of three wayemail [email protected]; update the label and mail it to OutreacPanCAN, 1500 Rosecrans Ave., Suite 200, Manhattan Beach, C90266; or call 877-272-6226. By giving the code number appears above your name, your request can be processed quicklyThank you for helping us to manage our expenses.

ElECTROnIC sERVICE REQUEsTE

Register now or thesixth A ua pa creatic Ca cer Advocac a scheduled or June 25 and 26, 2012, in Washington, D.C.

To learn more and register, goto www.pancan.org/AD2012.

Registration will close onMay 11, 2012, or whenevercapacity is reached.

Right: Advocacy Day 2011

www.pAnCAn.ORg/sTORE

outreach feb 2012

Documents