2016 Impact Report in the Fight Against Pancreatic Cancer, Each One of Us Is Important
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INDIVIDUAL EFFORTS DRIVE PROGRESS IN THE FIGHT AGAINST PANCREATIC CANCER. BUT WHEN WE WAGE HOPE TOGETHER, WE EFFECT GREATER 2016 IMPACT REPORT IN THE FIGHT AGAINST PANCREATIC CANCER, EACH ONE OF US IS IMPORTANT. Your individual support makes a meaningful difference as we continue to push for progress. But when we Wage Hope together, we’re able to do something revolutionary. Working in unison, we are an unstoppable movement. Together, we have the power to change the course of this terrible disease forever. We appreciate your steadfast support in making a vital impact on the lives of patients and families fighting pancreatic cancer. The important changes you have set into motion bring us ever closer to our goal of doubling pancreatic cancer survival and raising $200 million by 2020. And none of it would have been possible without you. There are no words to adequately express our gratitude for your partnership with us. We make an incredible team! Over the past year, we have achieved a number of impressive accomplishments. Your commitment has enabled us to reach exciting new milestones. Still, we have to keep pushing for further breakthroughs. There’s no limit to how much more we can do when we Wage Hope together. CONTENTS Scientific Research 1 Government Advocacy 2 Patient Services 3 Community Outreach 4 The Road to 2020 5 2015–2016 Financial Position 7 2015–2016 Fiscal Year Donors 8 Purplestride Fundraisers 26 DIY Event Fundraisers 29 Lifetime Giving 31 When we Wage Hope together, progress is accelerated and more scientific discoveries happen. You enable scientists to seek out innovative early-detection methods and pioneer new treatments for pancreatic cancer. You give researchers the power to be bold, enabling them to make the breakthroughs we need to change the future of this disease. Additional updates from Scientific Research Our total research investment rose 38% over the prior year, to $9.5 million. 2016 We brought the administration of the Grants Program in-house, handling all pre- and post-award activities for the 2016 Research Acceleration Network-2 Grants, Translational Research Grants, and Fellowships. We strengthened Community for Progress, giving us the chance to We funded 19 grants that supported engage with the broader pancreatic 25 researchers at 18 institutions across cancer community. the country, totaling $7.14 million. Along with Jordan Berlin, M.D., we co-authored an article on future clinical trials in the high-impact Journal of the American Medical Association Oncology. Cumulatively, since 1999, we’ve We launched Precision Promise, a revolutionary clinical trials platform awarded 142 grants to 143 that will offer patients individualized scientists at 55 institutions, therapeutic options based for each totaling $35.4 million. stage of treatment. 2016 PANCREATIC CANCER ACTION NETWORK IMPACT REPORT 1 When we Wage Hope together, we can advocate for greater federal research funding. You have proven time and time again that when you take action, Congress listens. Your efforts keep pancreatic cancer at the forefront with Congress and have helped us increase overall funding for pancreatic cancer by over 500% since 1999. Additional updates from Government Advocacy We helped pass a Congressional bill that boosted funding for the With the Deadliest Cancers Coalition, National Institutes of Health (NIH) by we hosted a standing-room only $2 million and secured another $2 congressional briefing on “The Path to Precision Medicine for the billion increase through the Senate Deadliest Cancers.” Appropriations Committee. 31,933 This year, committed pancreatic cancer advocates sent Congress More than 600 people 31,933 emails. attended Advocacy Day, representing 49 states. Cumulative We secured a 22% increase in Congressional support to retain pancreatic cancer in the Department of Defense (DOD) Peer-Reviewed Cancer Research Program (PRCRP). ly, since 1999, we’ve awarded 142 grants to 143 scientists at 55 institutions, totaling $35.4 million. 2016 PANCREATIC CANCER ACTION NETWORK IMPACT REPORT 2 When we Wage Hope together, we can offer more support and share more knowledge. Because of you, patients and their families receive very individualized support through Patient Central. With greater disease education, patients and families can make better, more informed treatment decisions. And with access to the most comprehensive pancreatic cancer clinical trials database in the country, they can explore personalized treatment options while laying the foundation for future care. Additional updates from Patient Services Patients, caregivers and healthcare professionals called upon our organization We launched our Patient Registry, 24,183 times – a 31% increase over last a one-of-its-kind global online database created to look for year – for disease information, treatment patterns in treatments, side effect options and hope. management and diagnostics that will lead to improved treatment options and outcomes for patients. 417 patients enrolled in the Know Your 425 SM Tumor personalized medicine service – and 425 new patient accounts were 243 patients received information about their created in the Patient Registry. specific mutation, allowing them to make informed decisions about treatment options. 96% Average quality assurance scores exceeded 96% for Patient Central services. 1,700 Clinical trial searches increased Through our educational initiatives, by 285% as a result of Clinical Trial 1,700 people attended live webinars, Finder – and 12.19% of patients with more than 4,500 views. enrolled in a clinical trial after Patient Central follow-up. 2016 PANCREATIC CANCER ACTION NETWORK IMPACT REPORT 3 When we Wage Hope together, we can elevate national awareness of an urgent cause. Our passionate volunteers are a purple wave of humanity that draws greater attention to pancreatic cancer, recruits more people to join our movement, and supports our mission through our national PurpleStride events. Additional updates from Community Outreach We raised $12.4 million net We launched the Action Center, a through PurpleStrides – an new website hub for volunteer and increase over last year. advocacy opportunities. Our 60 affiliates across the nation help raise awareness about pancreatic cancer and the services we provide. Volunteers contributed nearly 82,469 This year, 82,469 people 147,000 hours of time to our cause. participated in PurpleStride events across the country. $1 MILLION Nearly 500 DIY fundraising events yielded more than $1M. Event sponsorships increased by 62%. 7,977 The Media Relations Chairs and Public Relations team secured more than 7,977 media hits, including TV, radio, online and print, totaling more than 23 billion impressions. 2016 PANCREATIC CANCER ACTION NETWORK IMPACT REPORT 4 With your help, we’re making steady progress toward our goal of doubling pancreatic cancer survival by 2020. Still, there are challenges we must surmount to keep progress moving forward. We have a bold strategy to address these challenges with even greater resolve and determination. But it can only happen if we Wage Hope together. CHALLENGE ONE There aren’t enough researchers and resources. The brightest minds are attracted to difficult challenges, but they need money to develop innovative solutions. We will continue to ensure that pancreatic cancer research receives increased private and federal funding. CHALLENGE TWO The clinical trial enrollment rate is too low. Only 4.2% of pancreatic cancer patients enroll in clinical trials, slowing progress toward new diagnostic tools and treatments. We will work to increase the clinical trial enrollment rate by continuing to inform patients about their options. CHALLENGE THREE Trials don’t match what patients need. Clinical research doesn’t take into account the heterogeneity of pancreatic cancer patients and their tumors. We promote running “smart” clinical trials by providing information through our innovative services like Know Your TumorSM, and driving clinical trials that are based on the needs of patients. CHALLENGE FOUR Approximately 80% of patients are treated by physicians who may only see a few pancreatic cancer patients a year. We will identify and share best practices in care and treatment with physicians and other healthcare professionals across the country. CHALLENGE FIVE Pancreatic cancer is one of the deadliest cancers, yet not enough people are taking action to change it. We’ll continue to heighten public awareness and visibility by growing our strong volunteer network that raises awareness and increase support. LET’S WAGE HOPE TOGETHER AND DRIVE MORE CHANGE. You’re already helping us rewrite the book on how to fight a deadly disease. Together, we will finish the next chapter. Our goal of raising $200 million by 2020 is getting ever closer. Working together, we must fund further research breakthroughs and enhance clinical care to improve patient outcomes. Your continued support is critical in enabling us to make a measurable difference for generations to come. And there are several ways we can Wage Hope together: Participate Donate Advocate Take part in local events to Help us reach our $200 Lift your voice to help us boost awareness and generate million fundraising goal. Your raise awareness within your critical donations. We have generosity will give patients community and ensure that greater impact when we join and families a more promising Congress hears us. We must forces! outlook, so Wage Hope with get the word out about our us. Together, we can fight cause so that we can expand