2011 ANNU AL REPOR T A BOUT U S The Colon Cancer Alliance (CCA) is the leading national patient advocacy organization dedicated to increasing screening rates and survivorship. Ask the hundreds of thousands of people we help each year and they will tell you we are an active, caring community. We know first-hand how devastating this cancer can be. We also know it doesnÕt have to be this way. We see a brighter future on the horizon. Our programs are reaching more communities, and more people are getting screened and beating this disease. We know that a future free of colon cancer isnÕt just a dream; it can be a reality. But, we canÕt do it alone. Our staff and army of volunteers are committed to taking action both nationally and locally through exciting and impactful campaigns and events. OUR MISSION Ð The Colon Cancer Alliance is a community that provides hope and support to patients and their families, while saving lives through screening, access, awareness, advocacy and research. OUR VISION Ð At the Colon Cancer Alliance, our vision is for a world free of colon cancer, where education, early detection and treatment lead to survivorship for all. OUR VAL UES COMPASSION Ð We care, and we are on your team. Since our founding, we have been the leader in peer support and encouragement. No one has to face this cancer alone. RESPECT Ð We recognize the courage and the dedication of all who are fighting this disease including survivors, families, the medical community, our partners and other cancer organizations. We believe that mutual respect and collaboration are absolutely essential. COMMITMENT Ð We are passionate about increasing survivorship and igniting change in the way this disease is viewed and discussed. We will work tirelessly to realize our vision of a world without colon cancer. EDUCATION Ð We will continue to support research and position ourselves on the forefront of new developments in colon cancer prevention and treatment and bring thiskn owledge to the public. CONFIDENCE Ð We know we are making a difference, and our tenacity drives us onward. We are inspired daily by the army of brave survivors in our ranks Ð living proof that colon cancer can be beat. C OLON CANCER ALLIANCE 2011 1 TABLE OF C ONTENTS A Letter from the CEO...........................................................3 Education and Community Engagement......................4-10 ¥ National Colorectal Cancer Awareness Month ¥ Conversations about Colorectal Cancer Webinars ¥ Voices Volunteer and Chapter Program ¥ National Conference ¥ CCA Online Awareness Events.........................................................11-12 ¥ Undy 5000 5K Run/Walk ¥ Stars Go Blue for Colon Cancer Benefit Concert Support Services ..........................................................13-17 ¥ Blue Note Fund ¥ The Colorectal Cancer Clinical Trial Call to Action Campaign ¥ Helpline ¥ Buddy Program ¥ My CRC Connections Advocacy.............................................................................18 Colon Cancer At-A-Glance .................................................19 How You Can Help ........................................................20-21 Financials ............................................................................22 Boards and Staff.....................................................23-24 2 C OLON CANCER ALLIANCE 2011 A LE T TER FROM THE CEO Dear Friends, The past year has been one of unprecedented growth for the Colon Cancer Alliance. From our humble beginnings as an online support group just over a decade ago, we have emerged as the leader in colon cancer awareness, education, research and advocacy initiatives. As I reflect upon the past year, I am proud of what we have accomplished and inspired by those who, even in the face of seemingly insurmountable odds, never give up hope. It is this hope that motivated us to take a good, hard look at who we really are and where we are going as an organization. And, after much thought and reflection, we made some changes. We are confident that our newly crafted mission, vision and values statements reflect a new era for the Colon Cancer Alliance Ð one of optimism, tenacity and confidence. However, what brings me the greatest joy is realizing that in some ways we havenÕt changed at all. What drives us now is exactly the same as what it was over ten years ago Ð providing a voice to individuals affected by colon cancer. I am extremely proud to present our 2011 Annual Report. In the following pages, weÕve highlighted our numerous accomplishments over the last year. Our existing programs have experienced dramatic growth, particularly national Dress in Blue Day, the Undy 5000, and the Blue Note Fund. We also launched exciting new programs including our Clinical Trial Matching Service, which connects patients with ground-breaking research based on their diagnosis and stage of disease. As we enter into a new year, prevention of colon cancer remains a major component of our mission. WeÕll continue working with legislators, researchers, regulators, prevention specialists, the business community, the medical community and the media to bring about change. WeÕll continue our advocacy efforts to ensure the voice of the colon cancer community is being heard loud and clear by all branches of government. Most importantly, in 2012, weÕll continue working with a team of dedicated employees, our growing network of volunteers, and our generous sponsors to find new ways to bring about change in the way people talk about colon cancer. Best wishes, Andrew Spiegel Chief Executive Officer Colon Cancer Alliance C OLON CANCER ALLIANCE 2011 3 EDUCATION AND C OMMUNITY ENGA GEMENT NATIONAL C O LORECTAL CANCER AWARENESS MONTH Salix Pharmaceuticals employees participate in Dress in Blue Day 2011. Staff were encouraged to get involved by wearing blue, learning the risk factors, and talking with others about colon cancer. In March, we celebrated a record-breaking Colorectal Cancer Awareness Month. Participation reached an all-time high as more companies, organizations and individuals than ever before rolled up their sleeves to fight this disease and raise awareness in their communities through educational and fundraising events. Our army of Voices volunteers across the country worked tirelessly, hosting events, distributing materials and enlisting the help of community leaders in elevating the profile of colon cancer. CEO Andrew Spiegel was joined by Colon Cancer Alliance staff, volunteers, and Board Members in Times Square to ring the NASDAQ closing bell on March 1, 2011. We kicked off the month in New York City, where our CEO, Andrew Spiegel, had the honor of ringing the NASDAQ closing bell on March 1. In Times Square, our animated public service announcement, ÒScreen My Colon!Ó played on the NASDAQ screen for a full hour before and after the closing, catching the attention of the bustling crowd below. 4 COLON CANCER ALLIANCE 2011 The Dress in Blue Day program was a fantastic success again this year. Annually, on the first Friday in March, we encourage individuals, healthcare providers, businesses and community groups across the country to wear blue and talk to each other about the importance of colon cancer screenings. Through our website, we provided participants with awareness and educational merchandise, free downloads and outreach materials. These resources helped participants to launch screening and awareness initiatives as well as raise funds to help eradicate colon cancer. The CCA thanks Genentech for their sponsorship of the Dress in Blue Day program, celebrating colon cancer survivors and screening. ÒOn behalf of Ethicon Endo-Surgery and the Colon Cancer Alliance, we would like to thank everyone who showed their support. Together, we can do wonderful things and we hope this will be the start of a new EES tradition.Ó On March 29, 2011, employees were seen breaking the dress code throughout Ethicon Endo-Surgery (EES) hallways. By donating $5 to the CCA, they had the privilege of wearing blue jeans to work that day, raising a total of $2,300. The CCA garnered national media attention in March, being featured on the Profiles Series, hosted by Lou Gossett, Jr. Additionally, we partnered with CBS HealthWatchª, Ethicon Endo-Surgery (EES), and the American Society of Colon and Rectal Surgeons (ASCRS) to host a live, interactive colon cancer awareness webcast moderated by Travis Stork of ÒThe DoctorsÓ and featuring Katie Couric and a panel of ASCRS experts. We also made awareness fashionable this year by teaming up with renowned fashion designer and colon cancer survivor Carmen Marc Valvo, who created a limited edition CCA t-shirt and donated a gown from his Black Label collection. Proceeds from both benefited CCA awareness and patient programs. Valvo further demonstrated his commitment to our mission by accepting a position on our Board of Directors. March saw the expansion of our community screening efforts through our partnership with Boehringer Ingelheim Pharmaceuticals, the makers of Dulcolax¨. Specially marked packages of the product sold in more than 14,000 Walmart locations and other major retailers, with a portion of the sales supporting local screening programs. Dress in Blue Day 2011 was sponsored by Genentech. For Dress in Blue Day, Carmen Marc Valvo designed a limited edition ladiesÕ t-shirt for the CCA. C OLON CANCER ALLIANCE 2011 5 EDUCATION AND C OMMUNITY ENGA GEMENT CONVERSATIONS ABOUT C OLORECTAL CANCER W EBINARS ÒThis was the first time The CCA brings the latest information directly to patients through our Conversations about Colorectal Cancer - Finding Hope webinars. I've ever participated in a These interactive, telephone and internet-based presentations webinar and it was easy by the nationÕs top experts are free and provide as can be. Thank you! Ò information that empowers participants to play a leading role in their healthcare management. The CCA hosted two webinars in 2011 with ÒAll in all, the webinar a total of nearly 600 registrants. Both received was excellent and the rave reviews from attendees. two hours went by The CCA partnered with EmergingMed and Fight Colorectal Cancer to present the Understanding quickly. Thank you for and Navigating Clinical Trials webinar in June.