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Record number of advocates rally on Capitol Hill for Pancreatic Cancer Advocacy Day 2010
CHAIRS MESSAGE
BOARD OF DIRECTORS
Jason Kuhn, Chair, Tampa, Fla. Stephanie R. Davis, JD, MA, Secretary, Sherman Oaks, Calif. Tim Ennis, Boca Raton, Fla. Julie Fleshman, JD, MBA, President & CEO, Los Angeles Stevan Holmberg, MBA, DBA, Potomac, Md. Peter Kovler, Washington, D.C. Laurie MacCaskill, Los Angeles Jai Pausch, Hampton Roads, Va. Stuart Rickerson, Rancho Santa Fe, Calif. Cynthia Stroum, Founding Chair Emeritus, Seattle
Jason Kuhn Board Chair P.S. Congratulations to David Tuveson, MD, PhD, who began serving a two-year term as the chair of the organization's Scientific Advisory Board in July. Look for more information about Dr. Tuveson's appointment in the February 2011 issue of Outreach.
OUR MISSION
The Pancreatic Cancer Action Network is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. Cover image: Angela Johnson www.redboatimages.com
Fellowship Award
One-year grant totaling $45,000 for an early career scientist to support his/her mentored research. Eligibility: Applicant must be in the first three years of a postdoctoral or clinical research fellowship (i.e., started fellowship on or after July 2, 2008) at the beginning of the grant term. Application Deadline: October 27, 2010, Noon ET
Innovative Grant
Two-year grant totaling $200,000 intended to further the development of new and innovative ideas and approaches, including those successful in other areas of cancer that show promise for pancreatic cancer. Eligibility: Applicant must be an independent junior or senior investigator (not including postdoctoral/clinical fellows). Letter of Intent Deadline: Closed
MEET A GRANTEE
Last year, our family funded our first research grant through the Pancreatic Cancer Action Network after losing our beautiful mother to pancreatic cancer. We found comfort in supporting the work of this most worthy organization while at the same time paying tribute to her. This year, we are thrilled to be able to fund an even larger grant to support the innovative thinking that we feel is necessary to one day find a cure. Our family is honored to play a role in helping to shape what is needed to stop this insidious disease.
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Fredman family
FOURTH ANNUAL PANCREATIC CANCER ADVOCACY DAY AND NATIONAL CALL-IN HAILED AS NOTABLE SUCCESS
Nearly 1,000 Pancreatic Cancer Action Network supporters from across the nation joined forces to support the fourth annual Pancreatic Cancer Advocacy Day and the National Call-In in June. On June 21, more than 400 advocates gathered in Washington, D.C. and were trained on up-to-the-minute advocacy messaging, Congressional strategy, and powerful ways of strengthening the impact of advocacy efforts in their own c o m m u n i t ies. The f o l l o w i n g day, the supporters traveled to Capitol Hill to share their stories and ask their Senators and Representatives to co-sponsor the Pancreatic Cancer Research & Education Act (S. 3220/H.R. Capitol Hill was awash in purple on June 745), a bill that 22, when more than 400 advocates carried will ensure that the bags with advocacy messaging. National Cancer Institute (NCI) creates a strategic plan to make progress in pancreatic cancer research. During the National Call-In on June 22, more than 2,000 calls were placed to more than 340 Congressional offices, echoing similar requests that were put forth during the in-person meetings with legislators in Washington, D.C. The combined efforts resulted in securing the support of more than half of the U.S. House of Representatives and one-fifth of the U.S. Senate for the bill. The efforts also enabled us to begin an impressive push forward to call for Congress to bring the bill to a vote. Now that we have secured significant bi-partisan support for the Pancreatic 4
Pancreatic Cancer Advocacy Day participants who met with Rep. Bill Foster (D-IL), third from left, included, from left, Medical Advisory Council Chair Mark Talamonti, MD, survivor Judy Sarvas, Claudia Trapp, Brittney Talamonti, Jason Talamonti and Anne Talamonti.
Cancer Research & Education Act, it is even more important that we continue our efforts, said Megan Gordon Don, Director of Government Affairs & Advocacy. First, we need you to ask your U.S. Representative to do everything that they
can to bring H.R. 745 to a vote and to get it passed before they return home this year. If the bill doesnt pass before the House adjourns, though, well need to work together to get all of our co-sponsors back on board, as well as many new ones when they return in January 2011. Well keep you posted on the latest developments at www.pancan.org/TakeAction, she added. Well need your help either way. This is truly an exciting time to be involved in advocacy. When the bill passes, not only will it mean critical pancreatic cancer research funding and essential accountability at the NCI, but we will be able to celebrate having made history together.
Twin Cities Affiliate advocate and PurpleRide Minneapolis Co-founder Renita Van Dusen gestures as she boards a bus bound for Capitol Hill.
Pancreatic Cancer Action Network Board Member Jai Pausch prepares her son, Dylan, before he speaks as his brother, Logan, looks on at Advocacy Day training.
Boston Advocacy Coordinator Yadhav Jayaraman and his family appeared at several Congressional meetings during Advocacy Day.
From left, advocate Fred Brindisi, Pancreatic Cancer Action Network Board Member and survivor Stuart Rickerson, and advocate Silvana Brindisi strategize for their meetings with their Members of Congress.
Boise Affiliate Coordinator and survivor John Bradley advocated with his sons Ian and Rae at the event.
Senate Majority Leader Senator Harry Reid (D-NV), second from left, met with advocates, from left, Lisa Hamburg, survivor Stuart Jed, Shannon Wood, Pancreatic Cancer Action Network President and CEO Julie Fleshman and Ginnie Jed.
PANCREATIC CANCER STUDY RESULTS PRESENTED AT AMERICAN SOCIETY OF CLINICAL ONCOLOGY MEETING
At the American Society of Clinical Oncology (ASCO) Annual Meeting, held in Chicago from June 4 to 8, 2010, investigators shared results of several clinical trials for the treatment of pancreatic adenocarcinoma. Summaries of a selection of these studies appear below. the experimental group was demonstrated and the patients overall survival was comparable between the arms. The study did not reveal a new treatment regimen but showed that investigators may choose to consider building on capecitabine when developing new first-line regimens.
PHASE II RESULTS
A Phase II study presented at the meeting compared gemcitabine alone to two other combinations: a targeted therapy drug called conatumumab plus gemcitabine, and another targeted therapy drug called AMG 479 plus gemcitabine. This study evaluated 125 otherwise healthy patients with metastatic pancreatic cancer who had not received prior treatment. Researchers wanted to learn if either of the new combinations showed better overall survival than gemcitabine alone. No significant differences in overall survival were seen, but investigators did see a trend towards longer length of time before the disease began to progress in both combination arms. While more information is needed to draw any conclusions about these regimens, the combinations were well tolerated and warrant further study. Additionally, a Phase I/II study of Rexin-G, a targeted genetic drug, was presented. This study looked at the safety and efficacy of Rexin-G as a treatment for metastatic pancreatic cancer that progressed after treatment with gemcitabine. Fifteen patients were given one of three dose-levels of Rexin-G for four weeks followed by additional treatment if they did not experience significant side effects. Overall, no significant toxicities were seen and there appeared to be a correlation between overall survival and the cumulative amount of Rexin-G administered. This evidence suggests that Rexin-G may control tumor growth and prolong survival, so further clinical studies are warranted. For more information about these studies or treatment options, or for a personalized clinical trial search, contact Patient and Liaison Services (PALS) toll-free MondayFriday from 7am-5pm, Pacific Time, at 877-272-6226 or e-mail pals@pancan.org.
Washington, D.C.
Chicago
Seattle
Go to www.pancan.org for more information and to register. 8 Information about fall educational lectures held nationwide is available as well.
Denny and Jan LaVercombe with their grandchildren, from left, Chris, Amber, Kailey, Trent and Grant
In April 2005, at the age of 65, I experienced the first indication that something was wrong with my health. At that time, several people approached me at a youth baseball game and mentioned, You must be playing a lot of golf lately because youve got a tan. My wife said it was actually yellow, not tan. An internists exam confirmed I did not have a suntan but jaundice, and I was referred to a gastroenterologist for tests to determine the cause. This doctors opinion was that my problem was caused by one of three things: gallstones, cancer in the bile duct or pancreatic cancer. Soon, I was sent to a local hospital for surgery. Despite the surgeons positive outlook, I had only been in surgery for an hour when the doctors found that a fist-sized tumor on my pancreas was too large and too close to a major blood vessel to be removed. So the surgeon inserted a temporary bypass around the tumor, closed me up and said it was incurable and I had six months to a year to live. They suggested chemotherapy and radiation to extend my life. During that period of both chemotherapy and radiation treatments, friends and family convinced me to get a second
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EVENTS SUMMARY
JUNE SEPTEMBER 2010
CALIFORNIA 8th Annual Walk Through the Vineyards, St. Helena, 6/12/2010 3rd Annual Day With the Sacramento Rivercats, 6/20/2010 Awareness Day With the Angels, Anaheim, 7/17/2010 Timothy J. Marsh Fishing For A Cure, San Diego, 7/17/2010 3rd Annual Fundraiser for a Cure in Memory of Bridget Fisher, Anaheim, 8/1/2010 Awareness Night With the Giants, San Francisco, 7/30/2010 Strikeout Pancreatic Cancer With the OC Flyers, Fullerton, 8/21/2010 Awareness Night With the Dodgers, Los Angeles, 9/3/2010 Awareness Night With the Los Angeles Galaxy, 9/11/2010 PurpleNight Out at Coyote Cantina, Redondo Beach, 9/27/2010 COLORADO PurpleStride Pikes Peak 2010, Colorado Springs, 7/31/2010 PurpleStride Western Slope 2010, Montrose, 8/21/2010 PurpleStride Golden Gallop 2010, Golden, 9/11/2010 DISTRICT OF COLUMBIA PurpleStride Washington, D.C. 2010, 6/19/2010 FLORIDA Awareness Night With the Manatees, Viera, 7/17/2010 Art for the Cure, Altamonte Springs, 8/28/2010 PurpleStride Jacksonville 2010, 9/18/2010 IDAHO Awareness Night with the Boise Hawks, 8/14/2010 PurpleRide Spoke-d'Alene 2010, Spokane to Coeur d'Alene, 8/28/2010 IOWA PurpleStride Iowa 2010, West Des Moines, 9/25/2010 LOUISIANA Corks N Canvas, Baton Rouge, 7/25/2010 Awareness Night With the Zephyrs, Metairie, 7/29/2010 MARYLAND PurpleSwim Baltimore 2010 In Memory of Bud Beatty, 8/8/2010 PurpleStride Maryland 2010, Cockeysville, 10/10/2010 MASSACHUSETTS Dough-Raisers Fundraiser at Uno Chicago Grill, Boston, 6/6/2010 Potluck Family Picnic, Pine Banks Park, 8/28/10 October 2010 OUTREACH MICHIGAN PurpleStride Detroit 2010, 9/12/2010 MINNESOTA Awareness Night With the Twins, 7/17/2010 PurpleRide Twin Cities 2010, 9/19/2010 PurpleStride Rochester 2010, 9/26/2010 MISSOURI Hospital Hill Run 2010, Kansas City, 6/5/2010 Purple Night Out 2: St. Louis, Rock Hill, 6/23/2010 Awareness Day With the Cardinals, St. Louis, 8/13/2010 NORTH CAROLINA PurpleBowl Raleigh-Durham 2010, 8/14/2010 NEW JERSEY Awareness Day With the Somerset Patriots, 7/18/2010 NEW YORK Awareness Night With the New York Mets, 7/28/2010 PurpleStride Long Island 2010 in Memory of Jimi Lee, 9/26/2010 OHIO PurpleStride Cleveland 2010, 6/12/2010 Garage Sale, Worthington, 7/17/2010 PurpleStride Central Ohio 2010, Clifton, 9/18/2010 PENNSYLVANIA Awareness Night With the Pittsburgh Pirates, 6/18/2010 PurpleStride Pittsburgh 2010 "Pick Up The Pace", 8/15/2010 Awareness Night With NEPA Miners Football, 8/14/2010 TENNESSEE PurpleStride Chattanooga 2010, 10/10/2010 TEXAS Awareness Night With the Round Rock Express, 7/21/2010 PurpleStride Austin 2010, 9/25/2010 WASHINGTON Awareness Day With the Seattle Mariners, 8/29/2010 WEST VIRGINIA Purple Power Night 2010, Charleston, 7/9/2010 WISCONSIN Night at Tazino's, Oak Creek, 6/9/2010 Awareness Night With the Mallards, Madison, 8/11/2010 PurpleStride Madison 2010, 9/19/2010 11
This year's Hugs Back campaign begins on October 15 and will run throughout the fall while supplies of the teddy bears last. Volunteers and supporters nationwide are encouraged to visit their local participating Tempur-Pedic retailer and give them some hugs back to thank them for their support of and commitment to our cause.
www.firstgiving.com/keepthememoryalive
On January 22, 1997, my husband, Randy Stein, was diagnosed with stage-four, inoperable pancreatic cancer, with metastases to the spleen and kidneys. At that time, the doctors told us he only had three months to live. Healthcare professionals, friends, and family tried to help, but they really didnt have any experience in dealing with the disease. The Internet only provided dire statistics and we did not know of any survivors. Ultimately, we found great medical care, and we dealt with each challenge as it presented itself. In spite of that frightening news and the lack of information available back then, Randy lived for more than eight years following his diagnosis. Those years were filled with travel and celebrations, and we appreciated each day because we gained new insight into the importance of living. During our journey, we met a woman named Pamela Acosta Marquardt, who had just founded the Pancreatic Cancer Action Network, and she asked us to get involved. This opportunity enabled us to help create a sorely needed resource for information on the disease and to help support awareness for a cancer that had previously been ignored. We joined other patients, caregivers, and activists in this effort and found great satisfaction in giving back. We raised money through the organizations annual An Evening with the Stars gala, and traveled to Washington, D.C. to advocate for
WWW.PANCAN.ORG/STORE
TO CONTACT US
If your address is incorrect, or you are receiving duplicate copies of this publication, you may submit changes in one of three ways: e-mail change@pancan.org; update the label and mail it to Outreach/ PanCAN, 2141 Rosecrans Ave., Suite 7000, El Segundo, CA 90245; or call 877-272-6226. By giving the code number that appears above your name, your request can be processed quickly. Thank you for helping us to manage our expenses.
CALENDAR OF EVENTS
DATE
10/17/2010 10/17/2010 11/4/2010 11/6/2010 11/6/2010 11/6/2010 11/6/2010 11/6/2010 11/7/2010 11/7/2010 11/7/2010 11/7/2010 11/7/2010 11/7/2010 11/13/2010 11/13/2010 11/13/2010 11/14/2010 12/5/2010
EVENT NAME
6th Annual "Time for Hope" Benefit PurpleStride St. Louis 2010 4th Annual Night of Hope - Tampa Bay 2010 PurpleStride South Florida PurpleStride Savannah 2010 PurpleStride Philadelphia 2010 PurpleStride San Antonio 2010 Jazzed for Hope 2010 PurpleStride Orlando 2010 PurpleStride Raleigh-Durham 2010 PurpleStride Danbury 2010 PurpleStride New Jersey 2010 PurpleStride Portland 2010 PurpleStride Puget Sound 2010 PurpleStride Atlanta 2010 PurpleStride Orange County 2010 PurpleStride San Diego 2010 PurpleStride DFW 2010 PurpleStride Lake Area 2010
CITY, STATE
Oak Forest, IL St. Louis, MO Tampa, FL Davie/Ft. Lauderdale, FL Tybee Island, GA Philadelphia, PA San Antonio, TX Madison, WI Orlando, FL Raleigh, NC Danbury, CT Parsippany, NJ Portland, OR Bellevue, WA Atlanta, GA Irvine, CA Bonita, CA Dallas, TX Lake Charles, LA
CONTACT
Audrey Montalto at amontalto@pancanvolunteer.org Stephanie Pisarski at spisarski@pancanvolunteer.org Carol Ferguson at cferguson@pancanvolunteer.org Kimberly Spelman at kspelman@pancanvolunteer.org Shelly Foster at sfoster@pancanvolunteer.org Donna Deoria at ddeoria@pancanvolunteer.org Jenny Finkbiner at jfinkbiner@pancanvolunteer.org Julie Jacobs at jjacobs@pancanvolunteer.org Diane Germ at dgerm@pancanvolunteer.org Marisa Grant at mgrant@pancanvolunteer.org Kristen Angell at kangell@pancanvolunteer.org Nicole Trella at ntrella@pancanvolunteer.org Ariane Chapple at achapple@pancanvolunteer.org Chelsea Orvella at corvella@pancanvolunteer.org Nancy Freedman at nfreedman@pancanvolunteer.org Roberta Luna at rluna@pancanvolunteer.org Lily Villaverde at lvillaverde@pancanvolunteer.org Mary Jo Jennings at mjennings@pancanvolunteer.org Kristi Remy at kremy@pancanvolunteer.org
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