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<strong>2012</strong><br />
<strong>Annual</strong> <strong>Report</strong>
About <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
The <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> (CCA) is<br />
<strong>the</strong> leading national patient advocacy<br />
organization dedicated to increasing<br />
screening rates and survivorship for colon<br />
cancer. Ask <strong>the</strong> hundreds of thousands of<br />
people we help each year, and <strong>the</strong>y will tell<br />
you we are an active, caring community. We<br />
know first-hand how devastating this cancer<br />
can be. We also know it doesn’t have to be<br />
this way.<br />
We see a brighter future on <strong>the</strong> horizon.<br />
Our programs are reaching more<br />
communities, and more people are getting<br />
screened and beating this disease. We know<br />
that a future free of colon cancer isn’t just a<br />
dream; it can be a reality. But, we can’t do it<br />
alone. Our staff and army of volunteers are<br />
committed to taking action both nationally<br />
and locally through exciting and impactful<br />
campaigns and events.<br />
www.facebook.com/coloncanceralliance<br />
@CC<strong>Alliance</strong><br />
OUR MISSION<br />
The <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> is a community that provides hope and support to patients and <strong>the</strong>ir<br />
families, while saving lives through screening, access, awareness, advocacy and research.<br />
OUR VISION<br />
At <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>, our vision is for a world free of colon cancer, where education,<br />
early detection and treatment lead to survivorship for all.<br />
OUR VALUES<br />
COMPASSION – We care, and we are on your team. Since our founding, we have been <strong>the</strong><br />
leader in peer support and encouragement. No one has to face this cancer alone.<br />
RESPECT – We recognize <strong>the</strong> courage and <strong>the</strong> dedication of all who are fighting this disease<br />
including survivors, families, <strong>the</strong> medical community, our partners and o<strong>the</strong>r cancer organizations.<br />
We believe that mutual respect and collaboration are absolutely essential.<br />
COMMITMENT – We are passionate about increasing survivorship and igniting change in <strong>the</strong> way<br />
this disease is viewed and discussed. We will work tirelessly to realize our vision of a world without<br />
colon cancer.<br />
EDUCATION – We will continue to support research and position ourselves on <strong>the</strong> forefront of new<br />
developments in colon cancer prevention and treatment and bring this knowledge to <strong>the</strong> public.<br />
CONFIDENCE – We know we are making a difference, and our tenacity drives us onward.<br />
We are inspired daily by <strong>the</strong> army of brave survivors in our ranks – living proof that colon cancer<br />
can be beat.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 1
Table of Contents<br />
<strong>2012</strong> Impact Summary ...................................................4<br />
A Letter from Our CEO ....................................................5<br />
<strong>Colon</strong> <strong>Cancer</strong> At-A-Glance ..............................................6<br />
Advocacy & Community Engagement ..........................7<br />
NATioNAl ColoreCTAl CANCer AWAreNeSS MoNTh ................8<br />
NATioNAl DreSS iN BlUe DAY .....................................................9<br />
VoiCeS VolUNTeer & ChAPTer ProGrAM .................................10<br />
MeeT oUr VolUNTeerS ............................................................11<br />
NATioNAl CoNFereNCe ..........................................................12<br />
SAPPhire AWArDS ....................................................................13<br />
ColoN CANCer AlliANCe oNliNe ..........................................14<br />
PATieNT ADVoCACY..................................................................15<br />
CoMMUNiTY heAlTh PArTNerShiP GrANT ProGrAM ................16<br />
Awareness ..............................................................................17<br />
UNDY 5000 5K rUN/WAlK SerieS ............................................18<br />
UNDY 5000 FUNDrAiSer SPoTliGhT ..........................................19<br />
STArS Go BlUe BeNeFiT CoNCerT ............................................20<br />
ColoN CANCer AlliANCe oNliNe STore ................................21<br />
BlUe STAr ChAMPioN MAP .................................................. 22-23<br />
CeleBriTieS GoiNG BlUe ..........................................................24<br />
Support .................................................................................... 25<br />
The BlUe NoTe FUND ............................................................... 26<br />
BlUe NoTe FUND ChAMPioNS ................................................. 27<br />
Toll-Free helPliNe .................................................................... 28<br />
The BUDDY ProGrAM .............................................................. 29<br />
MY CCA SUPPorT oNliNe CoMMUNiTY .................................... 30<br />
Research ..............................................................................31-33<br />
How You Can Help ...........................................................34-36<br />
The Global <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> .................................. 37<br />
Financials, Board & Staff ................................................... 38<br />
FiNANCiAlS ............................................................................. 39<br />
BoArD oF DireCTorS............................................................... 40<br />
MeDiCAl AND SCieNTiFiC ADViSorY CoMMiTTee ....................... 40<br />
oUr STAFF ............................................................................... 41<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 3
<strong>2012</strong> Impact Summary<br />
550,000+<br />
Individuals<br />
Supported<br />
In <strong>2012</strong>, <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> brought hope and support to more than<br />
half a million patients, caregivers, survivors, family members and advocates<br />
across <strong>the</strong> country. With <strong>the</strong> help of 19 major partners, we invested $2,490,565<br />
in helping individuals and local communities through our screening, research,<br />
support, financial assistance and o<strong>the</strong>r programs.<br />
2<br />
New <strong>Colon</strong> <strong>Cancer</strong><br />
Drugs Approved<br />
by FDA<br />
4 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
$2.5<br />
Million<br />
Invested locally<br />
16,000+<br />
Helped by<br />
our Patient<br />
Support Team<br />
19<br />
Major<br />
partners<br />
<strong>2012</strong> MAJOR ACCOMPLISHMENTS<br />
$120,000<br />
Given in Financial<br />
Assistance to<br />
Patients<br />
11,850<br />
Undy 5000 5K<br />
Participants<br />
in 17 Cities<br />
600,000<br />
500,000<br />
400,000<br />
300,000<br />
200,000<br />
100,000<br />
0<br />
IndIvIduAlS SuppoRted<br />
165,413<br />
2010<br />
3,700+<br />
Advocates<br />
Engaged Across<br />
All 50 States<br />
338,783<br />
2011<br />
555,660<br />
<strong>2012</strong><br />
$150,000<br />
Awarded to<br />
Screening and<br />
Research Programs
A Letter from Our CEO<br />
Dear Friends,<br />
on our Facebook page, we recently posed this question to our followers: Would you ra<strong>the</strong>r devote your resources to preventing a<br />
disease or curing it?<br />
Without a doubt, it’s a tough question. When my mo<strong>the</strong>r was diagnosed with colon cancer, i would have given anything for a<br />
cure. But <strong>the</strong> heartbreaking realization is that she wouldn’t have had cancer if she’d been screened early enough. <strong>Colon</strong> cancer is<br />
one of <strong>the</strong> few cancers where we can be proactive – you might say <strong>the</strong> strongest defense is a good offense. Thanks to our army of<br />
passionate supporters and tireless volunteers, <strong>2012</strong> saw us take a giant leap closer to our vision for a world without colon cancer,<br />
where education, early detection and treatment lead to survivorship for all.<br />
it has truly been a monumental year for our <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> family. our organization continues to grow as our mission takes<br />
root and sp<strong>read</strong>s locally, nationally, and now even globally, reaching some important milestones along <strong>the</strong> way. We hosted our<br />
groundbreaking ninth National Conference on a hot button issue that has stumped <strong>the</strong> medical community, and we funded innovative<br />
new research and screening programs. For <strong>the</strong> first time in six years, two new colon cancer drugs received FDA approval. Thousands<br />
of people joined us in advocating to close a loophole in <strong>the</strong> Affordable Care Act’s Medicare coverage of colonoscopies – an<br />
ongoing campaign in 2013. And thanks to supporters like you, we saw unprecedented involvement from individuals, schools,<br />
hospitals and community groups “going blue” for National Colorectal <strong>Cancer</strong> Awareness Month.<br />
i’m both humbled and inspired by what i’ve seen our network of staff, volunteers, advocates, patients and sponsors do in <strong>the</strong> past year.<br />
Toge<strong>the</strong>r, we’re saving lives. We’re working tirelessly to ensure that our children and grandchildren never know <strong>the</strong> pain of losing a<br />
loved one to this disease. We haven’t yet arrived at that future, but <strong>the</strong> achievements of this year make it clear that we’re on our way.<br />
in this <strong>2012</strong> <strong>Annual</strong> report, we’ve highlighted some of those achievements to show what ground we’re gaining in <strong>the</strong> fight against<br />
colon cancer.<br />
We won’t rest on <strong>the</strong> successes of <strong>2012</strong>, though. As we welcome 2013, we will soldier on in our campaign against colon cancer.<br />
We will join forces with legislators, researchers, regulators, prevention specialists, <strong>the</strong> business community, <strong>the</strong> medical community,<br />
<strong>the</strong> media and people like you. We won’t stop until this disease is eliminated, and we’re so thankful to have you on our team.<br />
Best wishes,<br />
Andrew Spiegel<br />
Chief Executive Officer, <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
@CC<strong>Alliance</strong>Ceo<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 5
<strong>Colon</strong> cancer is<br />
<strong>the</strong> second<br />
leading cause<br />
of cancer-related<br />
death in <strong>the</strong> U.S.<br />
6 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
<strong>Colon</strong> <strong>Cancer</strong> At-A-Glance*<br />
On average,<br />
your risk is about<br />
1 in 20, although<br />
this varies widely<br />
according to<br />
individual risk<br />
factors.<br />
90% of new<br />
cases occur in<br />
people<br />
50 or older.<br />
People with a<br />
first-degree relative<br />
(parent, sibling or<br />
offspring) who has<br />
colon cancer have<br />
two to three times<br />
<strong>the</strong> risk of<br />
developing <strong>the</strong><br />
disease.<br />
There are currently<br />
more than one<br />
million colon cancer<br />
survivors<br />
in <strong>the</strong> U.S.<br />
*Source: American <strong>Cancer</strong> Society
Advocacy &<br />
Community<br />
Engagement<br />
”When I saw my bro<strong>the</strong>r’s classmates dressed in blue to support me, I broke<br />
down in tears. It provided me with strength and understanding that I was<br />
not battling this cancer alone. I will continue to participate in Dress in Blue<br />
Day and do all that I can to sp<strong>read</strong> awareness. <strong>Colon</strong> cancer is preventable,<br />
treatable and beatable. I wish for a day when no one has to hear <strong>the</strong> words,<br />
‘it’s colon cancer.’ This is possible through awareness and early screening.”<br />
Ashley Havlena, 25<br />
Stage III Survivor<br />
Students and staff at David City High School in David City, Nebraska<br />
wore blue for Ashley on Dress in Blue Day.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 7
10,000+<br />
participants<br />
31<br />
days<br />
10+<br />
CCA Hosted<br />
events<br />
8 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
NATIONAL COLOrECTAL CANCEr<br />
AwArENESS MONTh<br />
in March, we celebrated a record-breaking Colorectal <strong>Cancer</strong> Awareness Month, starting with National Dress in Blue Day and<br />
<strong>the</strong> ringing of <strong>the</strong> NASDAQ closing bell. Participation reached an all-time high as more companies, organizations and individuals<br />
than ever before rolled up <strong>the</strong>ir sleeves to fight this disease and raise awareness in <strong>the</strong>ir communities through educational and<br />
fundraising events.<br />
our army of Voices volunteers nationwide worked tirelessly, hosting events, distributing materials and enlisting <strong>the</strong> help of community<br />
leaders in elevating <strong>the</strong> profile of colon cancer.<br />
MARCH 1 Kickoff with <strong>the</strong> NCCrT* Family PlZ<br />
Campaign and Screen This Too! PSA<br />
MARCH 2 National Dress in Blue Day<br />
MARCH 3 Sacramento Undy 5000 5K<br />
MARCH 6 CCA rings <strong>the</strong> NASDAQ Closing Bell<br />
MARCH 6 Stars Go Blue Benefit Concert<br />
MARCH 7 Understanding Current &<br />
Future legislation Tele-Chat<br />
March also saw <strong>the</strong> expansion of our community screening efforts through our partnership with <strong>the</strong> makers of Dulcolax. More than<br />
eight million specially-marked packages of <strong>the</strong> product sold in major retailers, with a portion of <strong>the</strong> sales supporting our Community<br />
Health Partnership Grant Program.<br />
Thanks to <strong>the</strong> efforts of our volunteers, <strong>the</strong> following landmarks also went blue in honor of March and National Dress in Blue Day:<br />
• State House Dome – Providence, rhode island<br />
• PECO Building Crown Lights – Philadelphia, Pennsylvania<br />
• Wrigley Building – Chicago, illinois<br />
MARCH 10 San Diego Undy 5000 5K<br />
MARCH 16 Petition to Turn <strong>the</strong> White house Blue Closes<br />
MARCH 28 Unite2Crush <strong>Colon</strong> <strong>Cancer</strong> rally<br />
MARCH 28 CBS healthWatch <strong>Colon</strong> <strong>Cancer</strong>/<br />
Digestive health Webcast<br />
MARCH 31 St. louis Undy 5000 5K<br />
• Borough Hall – Brooklyn, New York<br />
• LaVeque Tower – Columbus, ohio<br />
• Niagara Falls – Niagara Falls, New York<br />
*National Colorectal <strong>Cancer</strong> roundtable
NATIONAL DrESS IN BLuE DAy<br />
The National Dress in Blue Day program was a fantastic success again this year! on March 2, <strong>2012</strong>, we saw a record<br />
number of individuals, healthcare providers, businesses and community groups across <strong>the</strong> country wear blue and talk to o<strong>the</strong>rs<br />
about <strong>the</strong> importance of colon cancer screening.<br />
Through Facebook, Twitter and email, participants submitted photos and let us know how and why <strong>the</strong>y were going blue.<br />
To help participants launch screening, awareness, educational and fundraising initiatives, we provided numerous resources,<br />
including awareness and educational merchandise, free downloads and outreach materials, through our website.<br />
Funds raised through <strong>the</strong> <strong>2012</strong> National Dress in Blue Day program benefitted colon cancer patients in need through our<br />
Blue Note Fund.<br />
orANGe reGioNAl MeDiCAl CeNTer - MiDDleToWN, NY<br />
The orange regional Medical Center celebrated Dress in Blue Day <strong>2012</strong> by inviting all<br />
staff to dress in blue and wear stickers downloaded from <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> website.<br />
<strong>Colon</strong> cancer fact sheets were hung throughout <strong>the</strong> hospital and staff handed out Buddy<br />
bracelets and pins.<br />
thank you to Salix, Amgen and Genentech for generously sponsoring <strong>the</strong> <strong>2012</strong> national Dress in Blue Day.<br />
SAM hoUSToN STATe UNiVerSiTY - hUNTSVille, TX<br />
With volunteer Vicki Barrilleaux, enrollment Management, Colleges Against <strong>Cancer</strong>, Bearkat one<br />
and <strong>the</strong> Bursar office at Sam houston State University participated in Dress in Blue Day <strong>2012</strong>.<br />
Staff paid $5 to wear jeans and helped raise $500.<br />
$70,000+<br />
Raised<br />
125+<br />
photos<br />
Submitted<br />
36<br />
Fundraising<br />
events Held<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 9
375+<br />
volunteers<br />
30<br />
States<br />
5<br />
Chapters<br />
Preventable,<br />
Treatable,<br />
Beatable!<br />
10 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
VOICES VOLuNTEEr & ChApTEr prOGrAM<br />
From speakers to advocates to fundraisers and more, <strong>the</strong> Voices Volunteer and Chapter Program rallies<br />
communities to bring our mission to <strong>the</strong> local level. Our Voices program boasts five official chapters<br />
and nearly 400 volunteers and advocates making a difference across <strong>the</strong> country.<br />
Our incredible volunteers spearheaded projects for our Dress in Blue Day program, lit local landmarks blue<br />
for National Colorectal <strong>Cancer</strong> Awareness Month, and organized 5K races to benefit community screening and<br />
treatment programs. These efforts and more helped us to reach more people than ever before.<br />
We are proud to be working alongside such dedicated and inspiring advocates. Their hard work and passion<br />
are truly leading our vision for a future free of colon cancer!<br />
Get Screened<br />
for <strong>Colon</strong><br />
<strong>Cancer</strong>!
Meet Our VOlunteers<br />
“Knowledge is power, and since many<br />
members of our medical team don’t have<br />
firsthand knowledge of what we’re going<br />
through, it’s up to us to reach out through<br />
whatever means we have to pass along<br />
all <strong>the</strong> tips, stories and encouraging words<br />
we can to our fellow survivors. The CCA’s<br />
Buddy Program, <strong>the</strong> National Conference<br />
and webinars help us do this, as do our<br />
contacts with support groups in our areas.<br />
helping o<strong>the</strong>rs with <strong>the</strong>ir questions and<br />
concerns certainly relieves <strong>the</strong>ir anxiety to<br />
some extent, and helps <strong>the</strong>m understand<br />
<strong>the</strong>y’re doing all <strong>the</strong>y can to continue<br />
living with colon cancer.”<br />
- Gordon Cole, 63<br />
Stage IV Survivor, CCA Buddy, Voices Volunteer<br />
Gordon Cole and his oncologist, Dr. Michael<br />
Morse, from Duke University Medical Center.<br />
“i initially became<br />
involved with <strong>the</strong><br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
in 2005. i wanted<br />
to connect with o<strong>the</strong>r<br />
patients and survivors<br />
to validate all of<br />
<strong>the</strong> mixed emotions<br />
i experienced.<br />
i wanted reassurance<br />
of survival. And<br />
most importantly,<br />
i wanted to empower<br />
myself with as much<br />
information as i could<br />
garner about chemo’s side effects. i found all<br />
of this through <strong>the</strong> CCA, gaining strength and<br />
solace through <strong>the</strong> online friendships formed by<br />
our common bond. i jumped at <strong>the</strong> opportunity<br />
when asked several years ago to volunteer as<br />
a CCA Buddy. it’s my way to give back to <strong>the</strong><br />
very same community who helped remind me<br />
of <strong>the</strong> light through some of my darkest days.”<br />
- Grace De La Rosa, 45<br />
Stage III Survivor, CCA Buddy<br />
After Grace conquered her cancer, she was able to get<br />
back to her active lifestyle, including participating in<br />
fitness competitions and spending time with her two<br />
children.<br />
“i recently became a CCA Buddy, which<br />
i find very rewarding. i wanted to offer<br />
hope and information to people who<br />
are on this cancer journey, and to just<br />
talk with people. Sometimes all we need<br />
is someone who knows firsthand what<br />
you’re going through. The thing i most like<br />
to stress to everyone is to stay positive.<br />
You are not a statistic!”<br />
- Roddy Belford, 57<br />
Stage III Survivor, CCA Buddy<br />
Roddy with his wife, Sharon, who urged him to<br />
visit <strong>the</strong> emergency room when he was having<br />
abdominal pain, prior to being diagnosed.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 11
190<br />
Attendees<br />
54<br />
Speakers &<br />
Facilitators<br />
34<br />
States<br />
Represented<br />
2<br />
days<br />
<strong>the</strong> <strong>2012</strong> national Conference<br />
was generously supported by Salix,<br />
Genentech, Amgen, phRMA, Genomic<br />
Health, MItA, Morphotek, Spectrum<br />
pharmaceuticals, Ambry Genetics,<br />
American College of Radiology,<br />
BIo, <strong>Cancer</strong> treatment Centers of<br />
America, Given Imaging and Sirtex.<br />
12 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
NATIONAL CONFErENCE<br />
We hosted our National Conference, Redefining Colorectal <strong>Cancer</strong> Survivorship:<br />
Live Your Best Life, in Baltimore, Maryland on July 20-21, <strong>2012</strong>. This year, <strong>the</strong><br />
conference kicked off with a groundbreaking pre-conference research symposium,<br />
Colorectal <strong>Cancer</strong> Diagnosis Under 50: Trends and Implications for <strong>the</strong> Future.<br />
The two-day event brought toge<strong>the</strong>r nearly 200 patients, survivors, family members,<br />
advocates, experts and healthcare professionals from across <strong>the</strong> country.<br />
The conference’s keynote presentation, “Beating <strong>Cancer</strong> and Staying healthy:<br />
The Path to recovery” was delivered by Brenda elsagher. A comedian and colon<br />
cancer survivor herself, Brenda kept conference attendees in stitches while dispensing<br />
wisdom on living through diagnosis and treatment. her keynote address was followed<br />
by several panel and breakout sessions. National experts covered a wide range<br />
of topics, including integrative <strong>the</strong>rapies, new treatments and <strong>the</strong> latest research<br />
on colon cancer.<br />
The <strong>2012</strong> National Conference was a huge success, with 100% of conference attendees indicating it was a valuable experience.<br />
Thanks to <strong>the</strong> institute for Continuing healthcare education, we were able to offer continuing education credits to healthcare<br />
professional attendees.<br />
“Until <strong>the</strong> conference, I had only met two o<strong>the</strong>r people<br />
that had been diagnosed with colon cancer. It was<br />
an awesome experience to talk about issues, feelings<br />
and concerns without getting uncomfortable glances<br />
or fidgeting during <strong>the</strong> conversation. Everything was<br />
understood without judgment or pity. I met some amazing<br />
people during that weekend and I will carry <strong>the</strong> memory<br />
of <strong>the</strong>m with me forever.”<br />
– Elisa Ellis, Attendee and Survivor<br />
“The <strong>2012</strong> National Conference<br />
was a life-changing experience.<br />
Until <strong>the</strong> conference, I was totally<br />
unaware of clinical trials and how<br />
<strong>the</strong>y could benefit me. I’m happy<br />
to report that starting Monday,<br />
August 27th I will start phase 1<br />
of a clinical trial at Robert Wood<br />
Johnson University.”<br />
– Sandra Roberts, Attendee and Survivor
SApphIrE AwArDS<br />
The <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> Sapphire Awards were created to<br />
recognize and celebrate innovators and leaders in <strong>the</strong> fight against<br />
colon cancer. We were proud to present and acknowledge this year’s<br />
recipients at <strong>the</strong> <strong>2012</strong> National Conference.<br />
Awardees pose with <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> staff and o<strong>the</strong>r patient advocates during <strong>the</strong> <strong>2012</strong> National Conference.<br />
<strong>2012</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
Sapphire Awards<br />
SAPPHIRE DISTINGUISHED SERVICE AWARD<br />
Teri Griege of St. Louis, Missouri<br />
Recognizes an individual who has made outstanding contributions<br />
to <strong>the</strong> patient community and has made an impact in advocacy,<br />
screening and prevention of colon cancer.<br />
SAPPHIRE VISIONARy AWARD<br />
Nancy Roach of Hood River, Oregon<br />
Recognizes an individual who is committed to making a<br />
difference in colon cancer through extraordinary contributions at<br />
both <strong>the</strong> local and national levels.<br />
ExCELLENCE IN PATIENT CARE SAPPHIRE AWARD<br />
Violeta Gnatz, BSN, CGRN of Plainfield, Illinois<br />
Recognizes a distinguished healthcare professional who has<br />
gone above and beyond to make a positive contribution to <strong>the</strong><br />
treatment of colon cancer.<br />
SAPPHIRE CORPORATE AWARD<br />
Northside Hospital<br />
Recognizes leadership of a business or healthcare organization<br />
that works to advance <strong>the</strong> treatment, screening, awareness and<br />
education of colon cancer on a national platform.<br />
SAPPHIRE AWARD FOR BEST UNDy 5000 MANAGEMENT<br />
CCA Voices of Central Arizona<br />
Recognizes a <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> Undy 5000 Management<br />
Team that celebrates survivorship and promotes colon cancer<br />
screening and awareness in <strong>the</strong> local community.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 13
2,340<br />
Website<br />
visits per day<br />
600+<br />
Webpages<br />
16,000+<br />
Facebook<br />
Fans<br />
10,000+<br />
twitter<br />
Followers<br />
14 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
COLON CANCEr ALLIANCE ONLINE<br />
WEBSITE<br />
Today, <strong>the</strong> internet is <strong>the</strong> go-to source for information. With more than 600 informative pages, our website offers answers to <strong>the</strong><br />
complex questions frequently asked by those affected by colon cancer. We provide information about screening, treatment, quality<br />
of life and financial issues, as well as a library of educational videos, chats, seminars and webinars. With nearly one million visitors<br />
in <strong>2012</strong>, our website allows people to get involved in national programs and local events, as well as connect with o<strong>the</strong>r colon cancer<br />
patients, survivors and caregivers.<br />
We also expanded our Spanish outreach program in <strong>2012</strong> by providing an increased amount of information on colon cancer,<br />
its symptoms and screening options entirely in Spanish.<br />
SOCIAL MEDIA<br />
18,000<br />
16,000<br />
14,000<br />
12,000<br />
10,000<br />
8,000<br />
6,000<br />
4,000<br />
2,000<br />
0<br />
302<br />
FACeBook GRoWtH<br />
3,431<br />
7,904<br />
16,180<br />
2009 2010 2011 <strong>2012</strong><br />
12,000<br />
10,000<br />
8,000<br />
6,000<br />
4,000<br />
2,000<br />
0<br />
tWItteR GRoWtH<br />
347<br />
1,448<br />
10,350<br />
2010 2011 <strong>2012</strong><br />
*Note: All statistics are inclusive across <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> platforms.
pATIENT ADVOCACy<br />
3,700+<br />
Advocates<br />
engaged<br />
LEGISLATIVE GOALS<br />
• Increase access to colon cancer screening and treatment<br />
• Educate survivors about issues that impact <strong>the</strong>m<br />
• Make colon cancer funding and research a Congressional priority<br />
LEGISLATIVE SPOTLIGHT<br />
The Removing Barriers to Colorectal Screening Act (H.R. 4120)<br />
The Problem<br />
• The Affordable Care Act (ACA) went into effect January <strong>2012</strong><br />
• Requires all preventive tests to be covered by insurance<br />
• Included a loophole changing a colonoscopy that finds polyps<br />
from a preventive test to a diagnostic test, causing Americans<br />
to wake up from <strong>the</strong> exam owing up to $1,000 in copay fees<br />
The Bill<br />
357<br />
Congressmen<br />
Contacted<br />
7<br />
trips to<br />
Capitol Hill<br />
12<br />
Bills<br />
Backed<br />
Ceo Andrew Spiegel speaks at our Unite2Crush<br />
<strong>Colon</strong> <strong>Cancer</strong> rally.<br />
• Introduced by Representative Charlie Dent (R-PA) in March <strong>2012</strong><br />
• Seeks to close <strong>the</strong> ACA loophole to ensure all colon cancer screening tests are covered by Medicare<br />
How We Took Action<br />
• Informed 30,000+ members through email about <strong>the</strong> issue<br />
• Created an action alert through which advocates could directly contact <strong>the</strong>ir representative about this issue<br />
• Engaged 1,000+ advocates to reach out to more than 350 House representatives<br />
• Secured 45 bill cosponsors<br />
• Prepared to reengage this issue with newly elected officials in 2013<br />
<strong>2012</strong> ADVOCACY MILESTONES<br />
JANUARY 1 Affordable Care Act (ACA) goes into effect<br />
FEBRUARY 16 CCA launches a petition to turn <strong>the</strong> White<br />
House blue, gaining 2,500 signatures via<br />
We<strong>the</strong>People.com<br />
FEBRUARY 27 CCA speaks at <strong>the</strong> Biosimilars Forum<br />
on Capitol Hill<br />
MARCH 1 Rep. Charlie Dent introduces H.R. 4120<br />
MARCH 1 CCA supports <strong>the</strong> release of <strong>the</strong> <strong>2012</strong><br />
Colorectal <strong>Cancer</strong> Legislation <strong>Report</strong> Card<br />
MARCH 7 CCA presents <strong>the</strong> “Affordable Healthcare-<br />
Understanding Current and Future<br />
Legislation” Tele-Chat<br />
MARCH 28 CCA hosts <strong>the</strong> Unite2Crush <strong>Colon</strong> <strong>Cancer</strong><br />
Rally in partnership with Chris4Life<br />
MAY 10 CCA signs on to support Food and Drug<br />
Administration Safety and Innovation Act<br />
(FDASIA)<br />
JUNE 28 ACA upheld by <strong>the</strong> Supreme Court<br />
JULY 11 CCA joins <strong>the</strong> Coalition for Accessible<br />
Treatment<br />
AUGUST 3 FDA approves Sanofi-Aventis’s Zaltrap for<br />
metastatic colon cancer patients<br />
SEPTEMBER 26 CCA launches action alert for H.R. 4120<br />
SEPTEMBER 27 FDA approves Bayer’s Stivarga for<br />
metastatic colon cancer patients<br />
OCTOBER 30 CCA joins <strong>the</strong> Campaign for Modern<br />
Medicine<br />
NOVEMBER 16 CCA joins <strong>the</strong> ASP Coalition<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 15
2,625<br />
Served in <strong>2012</strong><br />
10+<br />
partners to date<br />
$150,000<br />
Awarded locally<br />
16 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
COMMuNITy hEALTh pArTNErShIp<br />
GrANT prOGrAM<br />
in <strong>2012</strong>, we started <strong>the</strong> Community Health Partnership Grant Program to provide funding to partners who help fur<strong>the</strong>r our<br />
mission locally in Undy 5000 5K communities. From providing screening tests to <strong>the</strong> underinsured to conducting research,<br />
<strong>the</strong> CCA partners with organizations, companies or individuals who:<br />
• Provide services that promote screening access<br />
• Provide treatment access<br />
• Conduct research that advances quality of life concerns and addresses barriers to screening<br />
Market Program Focus Partner and Program Name<br />
Number to<br />
be served<br />
Atlanta, GA Screening northside Hospital, Colorectal <strong>Cancer</strong> prevention & Assistance program 100<br />
Buffalo, nY Screening Independent Health Foundation, Good for <strong>the</strong> neighborhood 200<br />
Cincinnati, oH Screening Academy of Medicine of Cincinnati, project Access 300<br />
dallas, tX Research<br />
Mary Crowley <strong>Cancer</strong> Research Centers, Jodie kline <strong>Colon</strong> <strong>Cancer</strong><br />
Research program<br />
denver, Co Screening Colorado Colorectal <strong>Cancer</strong> Screening program 450<br />
long Branch, nJ Screening Monmouth Medical Center 300<br />
nashville, tn treatment <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>, Blue note Fund 400<br />
philadelphia, pA Screening<br />
<strong>2012</strong> PARTNERS<br />
Abramson <strong>Cancer</strong> Center at <strong>the</strong> university of pennsylvania,<br />
West philadelphia GI outreach & Access program<br />
piedmont triad, nC Screening Forsyth Medical Center Foundation, Community Care Center 100<br />
phoenix, AZ treatment Arizona department of Health Service, Fit at Fifty HealthCheck 7<br />
Sacramento, CA Screening California Colorectal <strong>Cancer</strong> Coalition (C4) 500<br />
San diego, CA Screening California Colorectal <strong>Cancer</strong> Coalition (C4) 1000<br />
tampa, Fl Screening university of South Florida B.R.I.d.G.e. Clinic 55<br />
Washington, dC Screening dC <strong>Cancer</strong> Consortium, Screen for life 1000<br />
25<br />
150
Awareness<br />
Stephanie Godri-Johnston was<br />
a devoted daughter, sister, wife<br />
and mo<strong>the</strong>r. But at <strong>the</strong> young<br />
age of 29, she was diagnosed<br />
with stage IV colon cancer.<br />
After a valiant, 18-month battle,<br />
she passed awayin May of<br />
Stephanie’s bro<strong>the</strong>r, Stephen, presents <strong>the</strong> big check to <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
staff members Ali Ornitz, Nicole Sheahan and Hannah Redford.<br />
<strong>2012</strong>. To honor Stephanie’s charitable spirit and love of<br />
running, her family and friends held <strong>the</strong> first annual Steph’s Fall<br />
5K in Forty Fort, Pennsylvania in October to raise awareness about<br />
this devastating disease. Hundreds came out for <strong>the</strong> race and<br />
$1,500 was raised in Stephanie’s name for <strong>the</strong> Blue Note Fund.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 17
17<br />
Cities<br />
$1.7<br />
Million<br />
Raised<br />
11,850<br />
Registered<br />
participants<br />
500<br />
Survivors<br />
Honored<br />
<strong>the</strong> <strong>2012</strong> Undy 5000 series was<br />
sponsored nationally by Boehringer<br />
Ingelheim, <strong>the</strong> maker of dulcolax;<br />
Salix pharmaceuticals; Amgen<br />
oncology; Genentech; ethicon<br />
endo-Surgery and Bayer HealthCare.<br />
18 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
uNDy 5000 5K ruN/wALK SErIES<br />
our Undy 5000 5K series fuses community involvement, screening initiatives and media buzz to<br />
bring <strong>the</strong> hammer down on colon cancer. This unique event is raising eyebrows and awareness<br />
by jumpstarting conversations, motivating people to get screened, celebrating survivors and<br />
remembering those lost to <strong>the</strong> disease.<br />
The series provokes discussion in unconventional ways. For instance, instead of <strong>the</strong> traditional<br />
race day t-shirt, participants receive a pair of commemorative boxer shorts – a tongue-in-cheek<br />
reference to <strong>the</strong> area affected by colon cancer. And although <strong>the</strong> Undy 5000 is a fun event, its<br />
serious message – screening can save your life – is not lost. A heartwarming ceremony follows<br />
<strong>the</strong> run, recognizing attending survivors and honoring those we’ve lost.<br />
This year, <strong>the</strong> Undy 5000 visited 17 U.S. cities and, with <strong>the</strong> help of 12,000 supporters,<br />
raised more than$1.7 million for local screening efforts, patient support services and awareness<br />
programs.<br />
By creating an open dialogue and a sense of camaraderie among those affected by colon<br />
cancer, <strong>the</strong> Undy 5000 is beating this disease, one step at a time.<br />
Triplets for Tony, participants at <strong>the</strong> Philadelphia Undy 5000,<br />
dress up and run in honor of a loved one lost to colon<br />
cancer.<br />
Participants dress up in Batman costumes at <strong>the</strong> <strong>2012</strong><br />
San Diego Undy 5000.
Tess Fraser –<br />
Barb’s Beautiful<br />
Booties –<br />
Buffalo<br />
Team Poop Strong – Phoenix<br />
Julie Pope & Kathy Bowman – Blue Mooners – Piedmont Triad<br />
uNDy 5000<br />
FuNDrAISEr<br />
SpOTLIGhT<br />
Blue Ribbon Booties – San Diego<br />
Brian Mansfield –<br />
Mansfield United –<br />
Nashville<br />
Jane Iturrino –<br />
Fight <strong>the</strong> Lyon –<br />
Jersey Shore and Philadelphia<br />
Ethicon Endo-Surgery – Team Sedation – Cincinnati<br />
ShopRite – Jersey Shore<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 19
Charlie Kelley<br />
Blue Note Fund Founder<br />
Grammy-Nominated Artist<br />
CCA Board Member<br />
Charlie Kelley knows<br />
all too well how hard<br />
<strong>the</strong> fight against<br />
cancer can be.<br />
A survivor himself,<br />
he leapt into action<br />
after his recovery by<br />
creating <strong>the</strong> successful<br />
Stars Go Blue Benefit<br />
Concert - but he<br />
didn’t stop <strong>the</strong>re.<br />
Understanding <strong>the</strong><br />
financial burdens of<br />
a colon cancer diagnosis, Charlie made it his<br />
mission to help those patients struggling to<br />
make ends meet. The Blue Note Fund started<br />
awarding grants in 2011 and has helped<br />
more than 800 families to date.<br />
We extend our deepest gratitude to Charlie<br />
and his wife, Nan. Thank you both for your<br />
extraordinary leadership and dedication.<br />
“When you’re fighting cancer, <strong>the</strong> last<br />
thing you want to think about is a bill<br />
you can’t pay.”<br />
– Charlie Kelley<br />
20 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
STArS GO BLuE BENEFIT CONCErT<br />
213<br />
Attendees<br />
7<br />
Stars performed<br />
$45,000<br />
Raised<br />
For <strong>the</strong> fourth consecutive year, we returned to Nashville, Tennessee for our Stars Go Blue Benefit Concert on<br />
March 6, <strong>2012</strong>.<br />
exile headlined to a sell-out crowd at <strong>the</strong> Country Music hall of Fame’s Ford Theater, with Trace Adkins making a<br />
special appearance for <strong>the</strong> band’s iconic hit, “Kiss You All over,” followed by Wade hayes joining in for “Super<br />
love.” hayes, who was undergoing treatment for stage iV colon cancer, received a standing ovation before<br />
chatting with <strong>the</strong> crowd openly and emotionally about his diagnosis, treatment and <strong>the</strong> importance of screening.<br />
After <strong>the</strong> show, <strong>the</strong> audience mingled with <strong>the</strong> artists at a reception and bid on guitar stools autographed by <strong>the</strong><br />
performers. The event was a great success and raised more than $45,000 to help patients in need through <strong>the</strong><br />
Blue Note Fund. Special thanks to our star volunteers Shelia Bates, Amy Gregory, Candace Dean, Joy Mangrum,<br />
Jane Kennedy and Jennifer Murray.<br />
The <strong>2012</strong> Stars Go Blue Benefit Concert featured Trace Adkins (not pictured), Exile’s Steve Goetzman, Marlon Hargis, J.P. Pennington, Sonny Lemaire, GAC’s Nan<br />
Kelley, Wade Hayes, Exile’s Les Taylor and Charlie Kelley (pictured left to right).<br />
<strong>the</strong> <strong>2012</strong> Stars Go Blue Benefit Concert was sponsored by Amgen, Salix, Genentech and Stop<strong>Colon</strong><strong>Cancer</strong>now.com, powered by Amsurg.
COLON CANCEr ALLIANCE ONLINE STOrE<br />
our online store features more than 60 merchandise products and education materials, from blue star bracelets and t-shirts to<br />
awareness posters and leaflets. The store also includes free downloadable materials, which make it easy for fundraisers and<br />
advocates to print and distribute. We also offer materials in Spanish as part of our hispanic outreach program.<br />
This year, we added inflatable colons to <strong>the</strong><br />
awareness materials catalogue, offering this unique<br />
educational tool in both a giant and mini size.<br />
MOST POPULAR STORE ITEMS<br />
• <strong>Colon</strong> <strong>Cancer</strong> Awareness Bracelet<br />
• Small Blue Star Lapel Pins<br />
• “Ask Me Why I’m Blue” Buttons<br />
• Blue Star Temporary Tattoos<br />
• CCA At-A-Glance Leaflets<br />
MOST POPULAR FREE DOWNLOADS<br />
• Dress in Blue Day Flyer<br />
• <strong>Colon</strong> <strong>Cancer</strong> Treatment Options<br />
• Dress in Blue Day Sticker Template<br />
• <strong>Colon</strong> <strong>Cancer</strong> Fact Sheet<br />
• “Ask Me Why I’m Blue” Sticker Template<br />
Shop now at www.ccalliance.org/shopcca<br />
Volunteer Janelle hill shows off <strong>the</strong> giant inflatable colon at an Arizona health fair.<br />
Volunteer Vanessa Ghigliotty stops by <strong>the</strong> merchandise booth at <strong>the</strong> <strong>2012</strong> National Conference.<br />
47,051<br />
Items ordered<br />
60<br />
Store Items<br />
1<br />
Giant Inflatable<br />
<strong>Colon</strong><br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 21
Roanne’s Race<br />
Craig Schwartz’s<br />
Marathron<br />
Road Warriors<br />
22 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
Heart of<br />
Biddeford<br />
BLuE STAr<br />
ChAMpION<br />
MAp<br />
<br />
1. Regina Hersey Memorial: $20,550<br />
2. Ina Rose: $12,000<br />
3. Blue Ribbon Snow Tour: $10,000<br />
4. Road Warriors: $10,000<br />
5. Fiesta Azul: $8,700<br />
6. Roanne s Race: $8,500<br />
7. Craig Schwartz s Marathon: $6,736<br />
8. Nor<strong>the</strong>ast Digestive Health Center s<br />
Highway to Health <strong>Colon</strong> <strong>Cancer</strong><br />
Awareness Event/Ride-In: $6,638<br />
9. Rose Milardo Old Saybrook<br />
Middle School Walk-a-thon: $6,081<br />
10. Tony Elliot Memorial Bowling Tournament:<br />
$5,190<br />
11. Heart of Biddeford 5K: $4,170
Ina Rose<br />
Rose Milardo Old Saybrook<br />
Middle School Walk-a-thron<br />
Blue Ribbon Snow Tour<br />
Regina Hersey<br />
Memorial<br />
Fiesta Azul<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 23
CELEBrITIES<br />
GOING BLuE<br />
FEBRUARY<br />
• Taylor Swift donates signed CD for CCA celebrity auction<br />
• Jon Stewart donates VIP tickets for CCA celebrity auction<br />
• CCA volunteer Vanessa Ghigliotty is featured on <strong>the</strong> Dr. Oz Show<br />
MARCH<br />
• Times Square plays our Screen My <strong>Colon</strong>! PSA<br />
• Fashion Designer Carmen Marc Valvo donates a gown<br />
for CCA celebrity auction<br />
• Miss Texas United States organizes a Dress in Blue Day<br />
event with her sorority, Tri Delta<br />
• Exile, Trace Adkins and Wade Hayes play at <strong>the</strong> CCA’s<br />
Stars Go Blue Benefit Concert<br />
• The CCA partners with CBS HealthWatch for a<br />
webinar moderated by Travis Stork of The Doctors<br />
• St. Louis Rams cheerleaders cheer on runners at <strong>the</strong><br />
St. Louis Undy 5000 5K<br />
APRIL<br />
• Senator Mark Grisanti attends <strong>the</strong> Buffalo Undy 5000 5K<br />
JUNE<br />
• The Indy 500 plays our Screen My <strong>Colon</strong>! PSA to 1.4 million<br />
at <strong>the</strong> Indianapolis Motor Speedway<br />
• Miss Colorado United States attends <strong>the</strong> Denver Undy 5000 5K<br />
• Recording artist Stefanie Johnson performs at <strong>the</strong> <strong>2012</strong> National<br />
Conference’s Blue Party<br />
• The CCA partners with Millennium Entertainment on A Little Bit<br />
of Heaven, featuring Kate Hudson, Whoopi Goldberg and<br />
Gael Garcia Bernal<br />
• CEO Andrew Spiegel meets with <strong>the</strong> Richard Petty Racing Team<br />
and Foundation<br />
24 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
We love to see celebrities getting involved and going blue! We work throughout <strong>the</strong> year<br />
to engage A-listers and o<strong>the</strong>r well-known advocates to speak out about colon cancer.<br />
Here are a few of <strong>the</strong> big names who got involved this year:<br />
JULY<br />
• Congressman Frank Palone attends <strong>the</strong><br />
Jersey Shore Undy 5000 5K<br />
SEPTEMBER<br />
• Katie Couric tweets about <strong>the</strong> Undy 5000 5K<br />
• The CCA meets Gabby Douglas,<br />
Eric Stonestreet and Donald Faison at<br />
Stand Up 2 <strong>Cancer</strong><br />
• Wade Hayes announces he will donate<br />
100% of proceeds from his new single,<br />
“Is It Al<strong>read</strong>y Time?” to <strong>the</strong> CCA<br />
• Reba McEntire tweets about Wade Hayes’<br />
new single and <strong>the</strong> CCA<br />
• The Dixie Chicks tweet about Wade Hayes’<br />
new single and <strong>the</strong> CCA<br />
OCTOBER<br />
• Grammy-nominated artist and CCA Board Member Charlie Kelley and<br />
his wife and GAC Top 20 host, Nan Kelley, spearhead <strong>the</strong> Nashville<br />
Undy 5000 5K<br />
• Music critic and USA Today columnist Brian Mansfield runs <strong>the</strong> Nashville<br />
Undy 5000 5K<br />
NOVEMBER<br />
• CCA volunteer Candace Henley is interviewed on<br />
<strong>the</strong> Steve Harvey Show<br />
• Alan Jackson announces he will donate 100%<br />
of proceeds from <strong>the</strong> sale of his photographic<br />
collection, Seasons of Sweetbriar, to <strong>the</strong> CCA’s<br />
Blue Note Fund<br />
.
Support<br />
“The My CCA Support Online Community is a source of<br />
inspiration and education in my odyssey of understanding and<br />
living with stage IV colon cancer. I love this group and want<br />
everyone with a connection to colon cancer to find My CCA<br />
Support and <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>. I always encourage <strong>the</strong><br />
staff at my cancer clinic to direct patients to <strong>the</strong>se great resources.”<br />
- Randall Cox, 57<br />
Stage IV Survivor<br />
My CCA Support Member<br />
Randall and his wife, Susan Caulfield. Randall is sporting his CCA cap!<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 25
2,500<br />
Applicants<br />
400<br />
Grants Awarded<br />
$120,000<br />
Given to<br />
patients in need<br />
26 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
ThE BLuE NOTE FuND<br />
The emotional and physical stress of a cancer diagnosis is almost unimaginable. Add to this <strong>the</strong> financial demand of medical bills<br />
and o<strong>the</strong>r treatment-related costs, and <strong>the</strong> stress can be completely overwhelming. Many patients are simply unable to meet <strong>the</strong> cost<br />
of having cancer.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> Board member and four-time Grammy nominee Charlie Kelley<br />
knows firsthand <strong>the</strong> pressure of dealing with colon cancer. he founded <strong>the</strong> Blue Note<br />
Fund to help relieve this pressure for patients in treatment. The program launched in 2011,<br />
providing much-needed financial relief to help offset <strong>the</strong> costs of treatment. Selected<br />
patients are awarded a one-time grant of $300 – enough to help pay down some bills<br />
and, most importantly, provide a glimmer of hope in a difficult time.<br />
Thanks to our generous supporters, <strong>the</strong> Blue Note Fund is making a tangible difference<br />
for <strong>the</strong> patients and families who have been devastated by this disease.<br />
“I just wanted to say thank you with all my heart. I just<br />
received <strong>the</strong> check from <strong>the</strong> Blue Note Fund, and it<br />
couldn’t have come at a better time. My car’s starting to die<br />
on me, and I have to get back and forth to <strong>the</strong> hospital. I still don’t have<br />
insurance, and I still don’t work because I’m in treatment and I’m just beat.<br />
This check means everything to me. I’m so blessed by God that you guys<br />
awarded me this, and I’m so grateful. Thank you so very, very much.”<br />
- Karen Nilson, 59<br />
Stage III Survivor, <strong>2012</strong> Blue Note Fund Awardee
BLuE NOTE<br />
FuND<br />
ChAMpIONS<br />
Wade Hayes<br />
<strong>Colon</strong> <strong>Cancer</strong><br />
Tribute Fund:<br />
$5,780<br />
Alan and<br />
Denise Jackson:<br />
$21,450<br />
Team Britton: $15,000<br />
Dave Platfoot Foundation: $2,500<br />
Max Bracero Crabbing for <strong>Cancer</strong> Memorial Fund: $4,045<br />
Reason to Party: $15,000<br />
Gail Gadekar: $15,000<br />
Debby Hudson<br />
<strong>Colon</strong> <strong>Cancer</strong> Foundation:<br />
$4,000<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 27
“After being diagnosed<br />
with stage I colon cancer,<br />
I called <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong><br />
<strong>Alliance</strong>. The representative I spoke<br />
with was intent on keeping me calm<br />
and grounded. The Helpline call was<br />
crucial in what I needed to know about<br />
my prognosis and what my next steps<br />
might be. Would I need chemo? What<br />
should I be eating? On <strong>the</strong> o<strong>the</strong>r end<br />
of <strong>the</strong> phone I found someone who<br />
could not only relate to me but gave me<br />
information that was crucial to what I<br />
needed to know as a newly diagnosed<br />
colon cancer patient.”<br />
Janell Richison, 49<br />
Stage I Survivor<br />
Janell and her son, Alemnehe Lemma, vacationing<br />
in Puerto Rico four months after her diagnosis.<br />
28 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
TOLL-FrEE hELpLINE<br />
10,859<br />
Callers<br />
Assisted<br />
4<br />
Staff<br />
Members<br />
154,238<br />
Minutes Spent<br />
on <strong>the</strong> phone<br />
This year, more than 10,000 patients and caregivers turned to our free helpline when <strong>the</strong>y needed<br />
answers to difficult questions or a listening ear.<br />
our helpline is staffed by our caring and knowledgeable Patient Support team, who is trained to<br />
support those with cancer and manage <strong>the</strong> wide range of emotions callers may be experiencing.<br />
From providing guidance to <strong>the</strong> newly diagnosed to connecting patients and <strong>the</strong>ir families to <strong>the</strong><br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>’s support services, our helpline staff sets <strong>the</strong> standard for expert and<br />
compassionate support.<br />
And with each passing year, more people are taking advantage of this free service. in fact, our<br />
helpline call volume has increased a notable 67% since 2011.<br />
OUR HELPLINE STAFF ANSWERS qUESTIONS ABOUT<br />
• Screening tests<br />
• Standards of treatment<br />
• The latest treatment options and treatment protocols<br />
• Clinical trials and registries<br />
• The body’s reactions to surgery and treatment<br />
• Financial, insurance and reimbursement issues<br />
Call our Helpline any time at (877) 422-2030. Calls are answered live from<br />
9:30 am to 4:30 pm ET, Monday through Friday.<br />
<strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> toll-free Helpline is sponsored by Genentech, Sanofi, Amgen, Bristol-Myers Squibb, Salix pharmaceuticals and<br />
Spectrum pharmaceuticals.
ThE BuDDy prOGrAM<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> Buddies are colon cancer survivors, caregivers, family and friends with experience and compassion.<br />
They know what it’s like for <strong>the</strong> newly diagnosed because <strong>the</strong>y’ve been <strong>the</strong>re too.<br />
Personalized training is provided for new Buddies by our Patient Support staff, ensuring each mentor is vetted and well-equipped<br />
to provide support for <strong>the</strong>ir Buddy match.<br />
Darlene and her nephew, Devonta, pose with<br />
<strong>the</strong> Chicago Wolves Hockey team mascot.<br />
BUDDIES ARE MATCHED BASED ON<br />
• Stage of Diagnosis<br />
• Age<br />
• Gender<br />
• Primary Concerns<br />
We’re proud to say many of our members<br />
have formed ongoing, mutually supportive<br />
friendships through this unique program.<br />
“Buddies are <strong>the</strong>re to listen, encourage and<br />
share our survival stories. By doing this, we are giving<br />
<strong>the</strong> patient a sense of hope that <strong>the</strong>y can win this battle too.<br />
For survivors and caregivers, Buddies offer support and a<br />
listening ear. This is useful because, at times, caregivers are<br />
unaware how to communicate, help or assist a loved one.<br />
Having someone <strong>the</strong>re to direct and guide you through <strong>the</strong>se<br />
situations can make everyone’s life a lot easier!”<br />
- Darlene Wade, 52<br />
<strong>Colon</strong> <strong>Cancer</strong> Survivor, CCA Buddy, Voices Volunteer<br />
300<br />
Requests<br />
38<br />
States<br />
257<br />
Buddies<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 29
3,200+<br />
Members<br />
100+<br />
daily users<br />
9<br />
Moderators<br />
24/7<br />
online<br />
Chat Room<br />
30 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
My CCA SuppOrT ONLINE COMMuNITy<br />
Formerly My CRC Connections, <strong>the</strong> My CCA Support online Community celebrated<br />
its fifth year in <strong>2012</strong> with a new look, expanded resources and more members than ever.<br />
My CCA Support empowers those affected by colon cancer to find and communicate<br />
with one ano<strong>the</strong>r easily and conveniently.<br />
PATIENTS, SURVIVORS AND CAREGIVERS FROM AROUND<br />
THE WORLD CAN<br />
• Seek practical advice from peers who share a similar diagnosis<br />
• Provide and receive peer support through real-time chats in both English and Spanish<br />
• Share personal stories and experiences<br />
• Be part of a community of peers<br />
• Find support and comfort<br />
• Search for o<strong>the</strong>r members by diagnosis, stage and location<br />
3500<br />
My CCA Support members can participate in live chats, webinars<br />
and message boards, and can create personal pages with photos, 3000<br />
videos and blogs. New features include Volunteer Spotlights,<br />
information pages in Spanish, resource and education pages.<br />
2500<br />
To join or learn more, simply visit<br />
www.MyCCASupport.org.<br />
2000<br />
1500<br />
1000<br />
500<br />
0<br />
934<br />
MeMBeR GRoWtH<br />
1,601<br />
2,009<br />
2,550<br />
3,200<br />
2008 2009 2010 2011 <strong>2012</strong><br />
<strong>the</strong> My CCA Support online Community is sponsored by Bristol-Myers Squibb, Salix pharmaceuticals and Amgen.
esearch<br />
Roanne Cairel was passionate and active,<br />
and when she was diagnosed with stage<br />
III colon cancer at just 19 years old, she<br />
was determined to fight. Despite<br />
Roanne’s bright spirit, she lost her<br />
battle after five years. In commemoration<br />
of Roanne, her friends and family hosted<br />
<strong>the</strong> inaugural Roanne’s Race 5K/10K in<br />
In November, Roanne’s friends and family joined at<br />
Robertson Park in Livermore, California to honor <strong>the</strong>ir hero.<br />
November, where nearly 300 people ran and raised $8,500 to support<br />
<strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>’s research initiatives. Specifically, this donation<br />
is helping educate healthcare providers about <strong>the</strong> need to better<br />
diagnose colon cancer in individuals under 50 years old.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 31
We’re committed to a world free of colon cancer.<br />
That’s why we conduct and support innovative research that<br />
increases screening rates for all and improves people’s lives.<br />
Our research programs and activities include<br />
MATCHING PATIENTS WITH FRONT-LINE<br />
RESEARCH TRIALS<br />
Programs like our Clinical Trial Matching Service connect patients to<br />
institutions developing cutting-edge treatments and new colon cancer<br />
<strong>the</strong>rapies. Through clinical trials, doctors and researchers are able to<br />
develop and improve lifesaving colon cancer treatments.<br />
FUNDING LOCAL RESEARCH<br />
The Community Health Partnership Grant Program provides funding<br />
to community partners who help fur<strong>the</strong>r our mission to provide hope<br />
and support to patients and <strong>the</strong>ir families, while saving lives through<br />
screening, access and research. The grant program is funded by our<br />
Undy 5000 5K run/Walk.<br />
COLLABORATING ON RESEARCH PROJECTS<br />
We work to improve quality of life for survivors and increase<br />
screening rates by conducting research studies on colon cancer<br />
screening barriers, treatment outcomes and survivorship issues.<br />
We have partnered with organizations and companies to conduct<br />
various types of research including national surveys, white papers<br />
and abstracts.<br />
32 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
Clinical Use of CT <strong>Colon</strong>ography (CTC) for <strong>Colon</strong> <strong>Cancer</strong><br />
Screening in Military Training Facilities and Potential Impact<br />
on HEDIS ® Measures Conducted in partnership with<br />
Walter Reed National Military Medical Center<br />
KEy FINDINGS<br />
1. CTC is actively being used for colon cancer screening across military<br />
treatment facilities.<br />
2. inclusion of CTC as a heDiS ® -compliant colon cancer screening test<br />
has <strong>the</strong> potential to significantly increase healthcare system compliance<br />
for National Committee for Quality Assurance (NCQA) colon cancer<br />
screening measures.
<strong>Colon</strong>oscopy Perceptions Survey Project Conducted with<br />
Salix Pharmaceuticals<br />
KEy FINDINGS<br />
1. People are familiar with colonoscopy as a screening test: Many had<br />
gotten a colonoscopy, but 39% of participants who had never had a<br />
colonoscopy indicated <strong>the</strong>y had been recommended for one.<br />
2. easiest and hardest part of a colonoscopy: 50% of participants who had<br />
a colonoscopy indicated <strong>the</strong> easiest part of <strong>the</strong> colonoscopy was <strong>the</strong><br />
procedure itself. The bowel preparation was considered <strong>the</strong> hardest part<br />
by 73% of participants.<br />
3. Top reasons why people haven’t gotten a colonoscopy: Age is <strong>the</strong> most<br />
frequently cited reason for participants 49 years or younger not having a<br />
colonoscopy. As for those 50 years and over, fear is <strong>the</strong> most frequently<br />
cited reason.<br />
Closing <strong>the</strong> Gap in <strong>Colon</strong> <strong>Cancer</strong> Screening Conducted<br />
with Quest Diagnostics<br />
KEy FINDINGS<br />
1. Time constraints, fear and cost concerns are major impediments to<br />
screening: Among patients who said fear prevented <strong>the</strong>m from being<br />
screened by any method, 61% said unpleasant bowel preparation was<br />
what deterred <strong>the</strong>m most.<br />
2. A large number of respondents did not adhere to guidelines calling for<br />
periodic testing after an initial screening: of those between 60 and 70<br />
years old, 33% claimed <strong>the</strong>y had been screened once and 22% said<br />
<strong>the</strong>y had been screened twice. The findings suggest that some patients,<br />
after being screened once, are lulled into a false sense of security and<br />
fail to undergo additional testing.<br />
3. Diagnostic advances may improve screening rates: 3 out of 4 (75%)<br />
survey respondents said <strong>the</strong>y would be screened more frequently if a<br />
blood test for colon cancer screening were available.<br />
Research Focus: The Under 50 Issue<br />
in <strong>2012</strong>, we worked with renowned doctors and leaders in <strong>the</strong> field of cancer<br />
research to address <strong>the</strong> steady rise in patients under <strong>the</strong> age of 50 who are<br />
diagnosed with colon cancer.<br />
This age group faces unique challenges to a cancer diagnosis, from work-related<br />
issues to complications in having children, managing a work-life balance<br />
and dealing with <strong>the</strong> stigma of colon cancer as an “older person’s disease.”<br />
We are excited to announce that this research will be made available through<br />
a groundbreaking White Paper in 2013.<br />
The Increasing Incidence of young Onset <strong>Colon</strong> <strong>Cancer</strong>:<br />
Implications for Primary Care Physicians<br />
KEy FINDINGS<br />
1. Although colon cancer incidence and mortality rates have been decreasing<br />
among individuals age 50 and older, approximately 10% of colon cancer<br />
cases are young-onset (i.e., occurring in individuals under age 50) and <strong>the</strong><br />
incidence of young-onset colon cancer is increasing significantly each year.<br />
2. Despite <strong>the</strong>se histological characteristics and a greater likelihood of<br />
presenting with metastatic disease, stage-specific survival rates in youngonset<br />
patients are generally at least equal to those of <strong>the</strong>ir later-onset<br />
counterparts.<br />
3. Physicians can improve identification and treatment of young-onset colon<br />
cancer patients by remaining aware that this disease is increasingly<br />
occurring in young adults and by using a two-pronged approach that<br />
addresses both screening and symptom evaluation.<br />
YOU CAN SUPPORT RESEARCH:<br />
www.ccalliance.org/research<br />
You can support colon cancer research through <strong>the</strong> CCA.<br />
Please contact Nicole Sheahan at (202) 628-0123 x 103<br />
or nsheahan@ccalliance.org for more information.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 33
how you Can help<br />
Leslie Jones and her family knew <strong>the</strong>y wanted to get<br />
involved in National Colorectal <strong>Cancer</strong> Awareness Month. So in<br />
March, Leslie rallied her loved ones and started an event in honor<br />
of her mo<strong>the</strong>r, Bernice Jones, who passed away from colon cancer<br />
<strong>the</strong> year before. The group hosted a bowling tournament and silent<br />
auction in honor of Bernice, raising more than<br />
$1,800 for <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> and<br />
sp<strong>read</strong>ing awareness to <strong>the</strong> local community.<br />
They even plan on opening an oncology<br />
center in Inglewood, California in 2013 to<br />
help promote cancer research and prevention.<br />
Leslie huddles with friends and family at <strong>the</strong> Lucky Strike<br />
Bowling Alley in Torrance, California, where 50 people<br />
came out to support her fundraising event.<br />
34 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong>
Make Our Vision a reality<br />
Our vision is for a world free of colon cancer. Thanks to support from people like you, we are able to provide<br />
high-quality programs and services, while saving lives through screening, awareness, access and research.<br />
Donate Directly<br />
Whe<strong>the</strong>r you choose to make a<br />
one-time gift in honor or memory<br />
of someone special or decide to become a monthly<br />
pledge partner, your gift will support vital educational<br />
and patient support programs. Make a tax-deductible<br />
donation at www.ccalliance.org or mail your check or<br />
money order to:<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong><br />
1025 Vermont Avenue, NW<br />
Suite 1066<br />
Washington, DC 20005<br />
Create a Blue<br />
Star Tribute<br />
A Blue Star Tribute is an online fundraising webpage<br />
which can be customized with your story and photos.<br />
Friends, family and coworkers can make donations<br />
and leave messages on your online guestbook. Blue<br />
Star Tributes can be created in memory of a loved<br />
one, in honor of an individual fighting colon cancer<br />
or in celebration of a milestone such as a wedding,<br />
anniversary or participation in endurance events. We<br />
will provide all <strong>the</strong> support you need in raising funds<br />
and awareness through this easy-to-use online tool.<br />
learn more at www.ccalliance.org/bluestartributes.<br />
Workplace Giving<br />
Many employers now<br />
offer an opportunity to give<br />
to a charitable cause through<br />
convenient payroll deduction,<br />
and several will even match <strong>the</strong>ir employees’<br />
gifts. Please contact your human resources office<br />
to learn more about giving opportunities in your<br />
workplace.<br />
The CCA is a proud member of Community health Charities of America<br />
(CHC), which offers convenient payroll deduction giving options for<br />
employees of many private firms.<br />
Federal employees can give through <strong>the</strong> Combined Federal Campaign<br />
(CFC). Our CFC number is: 32697.<br />
Double your Support through<br />
Matching Gifts & Volunteer Grants<br />
Many companies participate in matching gift<br />
and/or volunteer grant programs, but <strong>the</strong>y<br />
may not be well publicized. We’ve partnered<br />
with Double <strong>the</strong> Donation to help donors<br />
and volunteers maximize <strong>the</strong>ir support. Visit<br />
www.double<strong>the</strong>donation.com/cca.php to see<br />
if you or your spouse is eligible to submit for a<br />
matching gift or volunteer grant. You can even<br />
download <strong>the</strong> required forms for your company<br />
directly from <strong>the</strong> link.<br />
Help a Patient by Giving<br />
to <strong>the</strong> Blue Note Fund<br />
Would you like to help a<br />
patient struggling to make ends meet due to <strong>the</strong> high<br />
cost of cancer treatment? The Blue Note Fund provides<br />
monetary relief to colon cancer patients in need<br />
through a one-time grant. Your gift could help cover a<br />
family’s utility bills or a patient’s travel cost to and from<br />
treatment during this difficult time. For more information,<br />
visit www.bluenotefund.org.<br />
Host a Fundraising Event<br />
in <strong>the</strong> fight against colon cancer, every dollar counts,<br />
and we would love your help. Consider holding a<br />
fundraising event in your community. For fundraising<br />
ideas and tips, visit www.ccalliance.org/help.<br />
on April 1, <strong>2012</strong>, Mike Despriet, emily Suess-Despriet and<br />
Brian Michaels participated in <strong>the</strong> Santa Cruz half Marathon<br />
and 10K as “Mike’s Team” to raise funds and awareness on<br />
behalf of <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 35
Join <strong>the</strong><br />
Legacy Society<br />
our Legacy Society can combine your philanthropic<br />
and estate planning goals to create positive change<br />
in <strong>the</strong> lives of those affected by colon cancer. Visit<br />
www.ccalliance.org/legacy to learn more and to<br />
<strong>read</strong> about individuals who have al<strong>read</strong>y made an<br />
impact through a planned gift.<br />
Become an Advocate<br />
rates of colon cancer have decreased in <strong>the</strong><br />
past decade; still, several populations continue to<br />
disproportionately suffer. in <strong>2012</strong>, more than 3,700<br />
advocates joined us in fighting for legislation that<br />
guarantees all Americans equal access to affordable<br />
and comprehensive medical coverage, including<br />
more than 1,000 who took action supporting h.r.<br />
4120, <strong>the</strong> “removing Barriers to Colorectal <strong>Cancer</strong><br />
Screening Act of <strong>2012</strong>.”<br />
Will you help? Stand up for <strong>the</strong> common good.<br />
Visit www.ccalliance.org/advocacy to learn about<br />
our latest initiatives and how you can get involved.<br />
Be a Buddy<br />
living with uncertainty is <strong>the</strong> biggest challenge for<br />
any person faced with a cancer diagnosis. even <strong>the</strong><br />
most close-knit families need outside support, and<br />
who better to provide that support than o<strong>the</strong>rs who<br />
have been <strong>the</strong>re? if you are a colon cancer survivor<br />
or caregiver, consider becoming a Buddy. Please<br />
visit www.ccalliance.org, or call our helpline at<br />
(877) 422-2030 to learn more.<br />
36 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
Volunteer with our Voices Program<br />
our Voices Volunteer and Chapter Program is a<br />
network of local volunteers located throughout<br />
North America who lead colon cancer-fighting<br />
efforts in <strong>the</strong>ir communities. We believe that one<br />
voice can save a life, and by uniting voices<br />
across <strong>the</strong> country, we can bring hope to every<br />
community.<br />
Get Involved with<br />
<strong>the</strong> Undy 5000<br />
our 5K series is growing fast, and we need your<br />
help! even if you’re not a runner, we’re always<br />
looking for dedicated individuals with a special<br />
skill or local connections that could help us pull off<br />
an amazing event. Perhaps your workplace might<br />
even be interested in a corporate sponsorship.<br />
Can’t help ahead of time? We can always<br />
use an extra hand on race day! Please visit<br />
www.undy5000.org to register or learn more<br />
ways you can help.<br />
in <strong>the</strong> early morning hours,<br />
volunteers sign in at a<br />
local Undy 5000 5K and<br />
prepare for a busy and<br />
eventful morning!<br />
Shop for a Cause<br />
With <strong>the</strong> help of our Cause<br />
Marketing Partners, a portion<br />
of <strong>the</strong> proceeds from your<br />
purchase will go directly to<br />
our mission.<br />
it’s as easy as shopping at more than 1,000 of your<br />
favorite name-brand retailers through iGive.com or<br />
checking out <strong>the</strong> promotions from one of our many<br />
partners at www.ccalliance.org/shop.<br />
Share your Story<br />
The personal stories of patients, survivors and<br />
caregivers can offer hope and inspiration to those<br />
affected by colon cancer. To share your story, visit<br />
www.ccalliance.org/stories. We also urge you to<br />
join My CCA Support, <strong>the</strong> CCA’s online community,<br />
and connect with thousands of people around<br />
<strong>the</strong> world who are sharing similar circumstances.<br />
Visit www.myccasupport.org for more information.<br />
Questions?<br />
Please contact us at info@ccalliance.org or call<br />
(877) 422-2030.<br />
The <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>, inc. is a not-for-profit<br />
501(c)3 corporation.<br />
Federal tax iD #86-0947831
ThE GLOBAL COLON CANCEr ALLIANCE<br />
In February <strong>2012</strong>, we were excited to announce a new partnership with our<br />
European counterpart, Europa<strong>Colon</strong>, to form <strong>the</strong> Global <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> (GCCA).<br />
The GCCA provides an international platform for existing colon cancer organizations and new advocacy<br />
groups. The GCCA unites advocates from all corners of <strong>the</strong> world in <strong>the</strong> fight against colon cancer and<br />
effectively increases awareness, effects policy change, educates patients and healthcare providers,<br />
and supports research.<br />
Continuing in 2013, <strong>the</strong> GCCA will invest in researching colon cancer and screening rates across <strong>the</strong><br />
globe as well as surveying <strong>the</strong> types of screening and awareness methods used by individual countries.<br />
To learn more about <strong>the</strong> GCCA, please visit www.globalcca.org.<br />
“We are excited to be part of a global organization that<br />
will provide hope. Combining our efforts with <strong>the</strong> fantastic work done by<br />
Europa<strong>Colon</strong> will help us ensure that our message of getting tested for colon cancer<br />
is heard globally. Through <strong>the</strong> GCCA, we now have <strong>the</strong> ability to make a powerful<br />
impact on this disease.”<br />
– Andrew Spiegel,<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> CEO<br />
C. Soundararaj (middle), managing trustee of SNR and Sons Trust, releases a<br />
book on colon cancer during an event for World <strong>Cancer</strong> Day. Amutha Arun<br />
(right), permanent trustee of Arunagiri Colorectal <strong>Cancer</strong> Trust, is given <strong>the</strong> first<br />
copy of <strong>the</strong> book.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 37
Financials,<br />
Board & Staff<br />
In July of 2011, renowned fashion designer and colon cancer survivor<br />
Carmen Marc Valvo joined <strong>the</strong> <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong>’s Board of<br />
Directors. Since <strong>the</strong>n, he’s gone above and beyond to raise<br />
awareness and support for <strong>the</strong> fight against this disease.<br />
Carmen has been instrumental in <strong>the</strong> success of many <strong>Colon</strong> <strong>Cancer</strong><br />
<strong>Alliance</strong> events and programs, notably National Dress in Blue Day and<br />
<strong>the</strong> Undy 5000 5K Series.<br />
Carmen (right) attends <strong>the</strong> VIP reception at Reason to Party’s<br />
spring gala, which raised more than $15,000 for our Blue<br />
Note Fund.<br />
38 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
“My work in fashion is my passion - I love it. But my<br />
true job is my advocacy work for colon cancer.”<br />
- Carmen Marc Valvo
FINANCIAL hIGhLIGhTS<br />
For <strong>the</strong> Fiscal Year ended June 30, <strong>2012</strong><br />
Revenue and Support<br />
Unrestricted<br />
Temporarily<br />
Restricted Total<br />
Revenue $1,269,784 $1,634,724 $2,904,508<br />
Released from Restrictions 3,534,918 (3,534,918) -<br />
TOTAL REVENUE AND SUPPORT 4,804,702 (1,900,194) 2,904,508<br />
Expenses<br />
Program Services<br />
Awareness 1,446,299 - 1,446,299<br />
Connection Campaign 240,334 - 240,334<br />
Conferences 208,251 - 208,251<br />
Education 513,519 - 513,519<br />
Chapters 44,364 - 44,364<br />
Community Health Grants 37,798 - 37,798<br />
Supporting Services<br />
General & Administrative 59,080 - 59,080<br />
Fundraising 467,165 - 467,165<br />
TOTAL ExPENSES 3,016,810 - 3,016,810<br />
Loss on Charitable Remainder Trust (340,649) - (340,649)<br />
Change in Net Assets 1,447,243 (1,900,194) (452,951)<br />
Net Assets, Beginning of year 1,295,397 5,522,494 6,817,891<br />
Net Assets, End of year $2,742,640 $3,622,300 $6,364,940<br />
Fiscal Year <strong>2012</strong> Functional Expenses<br />
1% Chapters<br />
17%<br />
Education<br />
2% General & Adminstrative<br />
1% Community Health Grants<br />
7%<br />
Conferences<br />
16%<br />
Fundraising<br />
8%<br />
Connection<br />
Campaign<br />
48%<br />
Awareness<br />
in fiscal year 2011, we were named as a partial benficiary of a charitable<br />
remainder trust with an estimated distribution value of $6.2M. At <strong>the</strong> end of fiscal<br />
year <strong>2012</strong>, 90% of our temporarily restricted net assets were trust related. The<br />
outstanding receivable of <strong>the</strong> trust at June 30, <strong>2012</strong> of $3.3M is temporarily<br />
restricted for time and unavailable for programatic use until we receive <strong>the</strong> funds.<br />
Due to <strong>the</strong> nature of <strong>the</strong> remaining assets in <strong>the</strong> trust, we are unable to predict<br />
exactly when <strong>the</strong>se funds will be received and <strong>the</strong>refore not able to rely on <strong>the</strong><br />
cash proceeds for funding specific fiscal year 2013 programs and events.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 39
BOArD OF DIrECTOrS<br />
Kevin Lewis<br />
CCA Co-Founder and Board Chairperson<br />
Principal and Partner, PwC<br />
Michael Zahaby<br />
Treasurer<br />
Chief Credit Officer and Managing Director<br />
CapitalSpring Finance Company, LLC<br />
John Daly, MD, FACS, FRCS (G), FRCS (I)<br />
Dean Emeritus and Donahoo<br />
Professor of Surgery<br />
MEDICAL AND SCIENTIFIC ADVISOry COMMITTEE<br />
Gordon Cole<br />
<strong>Colon</strong> <strong>Cancer</strong> Survivor<br />
Michael Choti, MD<br />
Surgeon<br />
Johns Hopkins University<br />
Kathleen Gamblin, RN, BSN, OCN<br />
Nurse<br />
National Coalition of Oncology Nurse Navigators<br />
Julio Garcia-Aguilar, MD, PhD<br />
Surgeon<br />
City of Hope National Medical Center<br />
Axel Gro<strong>the</strong>y, MD<br />
Medical Oncologist<br />
Mayo Clinic<br />
40 <strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong><br />
James Fleshman, MD<br />
Chief of Surgery<br />
Baylor University Medical Center<br />
Joseph A. Frick<br />
Vice Chairman and Managing Partner<br />
Diversified Search<br />
Leonard Jacob, MD, PhD, DSc (Hon.)<br />
Chairman of <strong>the</strong> Board, Antares Pharma<br />
Charlie Kelley<br />
Owner, Donelson Ranch Productions<br />
Grammy-Nominated Producer and Recording Artist<br />
Amy Halverson, MD<br />
Surgeon<br />
Robert H. Lurie Comprehensive <strong>Cancer</strong> Center<br />
Michael D. Kreines, MD, FACP, FACG<br />
Gastroenterologist<br />
University of Cincinnati<br />
John L. Marshall, MD<br />
Medical Oncologist<br />
Ruesch Center for <strong>the</strong> Cure of Gastrointestinal <strong>Cancer</strong><br />
Lombardi Comprehensive <strong>Cancer</strong> Center<br />
Beth McFarland<br />
Radiologist<br />
American College of Radiology<br />
Jose Mendoza Silveiras, MD, PhD<br />
<strong>Colon</strong> <strong>Cancer</strong> Survivor<br />
Jeffrey A. Meyerhardt, MD, MPH<br />
Public Health<br />
Dana-Farber <strong>Cancer</strong> Institute<br />
Michael Retsky, PhD<br />
Staff, Harvard School of Public Health<br />
Faculty, University College London<br />
Prof Adj., UANL, Monterrey, Mexico<br />
Jerry L. Tolk<br />
Senior Vice President and Group Head<br />
Edelman<br />
Carmen Marc Valvo<br />
Fashion Designer<br />
Entertainment Industry Foundation (EIF) Ambassador<br />
Edith Mitchell, MD<br />
Clinical Professor of Medicine and<br />
Medical Oncology<br />
Jefferson Medical College of<br />
Thomas Jefferson University<br />
Mark Pochapin, MD<br />
Director of <strong>the</strong> Division of Gastroenterology<br />
and Shultz-Leeds Professor of Gastroenterology<br />
NYU Medical Center<br />
Laura Porter, MD<br />
<strong>Colon</strong> <strong>Cancer</strong> Survivor<br />
Vetta L. Sanders Thompson, PhD<br />
Psychologist<br />
Washington University<br />
David Woo, PhD<br />
Research Consultant
COLON CANCEr ALLIANCE STAFF<br />
Andrew Spiegel<br />
Chief Executive Officer<br />
Jasmine Greenamyer<br />
Chief Operating Officer<br />
Melissa Bjorklund<br />
Operations Coordinator<br />
Nancy Butterfield<br />
Volunteer Engagement and<br />
Exhibit Coordinator<br />
Andrea Clay<br />
National Partnership<br />
and Strategy Director<br />
Crawford Clay<br />
Patient Advocacy Coordinator<br />
Steve Cooper<br />
Database Coordinator<br />
Randy Henniger<br />
Patient Support Advocate<br />
Becky Kerner<br />
Communications Associate<br />
Stephanie Marcos<br />
Operations Associate<br />
Undy 5000 5K Series<br />
Katie Matusik<br />
Senior Communications<br />
Coordinator<br />
Jose Mendoza Silveiras<br />
MD, PhD<br />
Medical Consultant<br />
Maura Molish<br />
Fundraising Intern<br />
Hannah Ornell<br />
Operations & Outreach<br />
Associate<br />
Undy 5000 5K Series<br />
Alison Ornitz<br />
Fundraising Associate<br />
Carol Orr<br />
Patient Support Advocate<br />
Chitra Panjabi<br />
Fundraising Manager<br />
Daniella Peña<br />
Assistant Director<br />
Undy 5000 5K Series<br />
Ervin Pinckney<br />
Operations Associate<br />
Laura Porter, MD<br />
Patient Advocate<br />
Medical Consultant<br />
Donna quinlan<br />
Program Director<br />
Martha Raymond<br />
Patient Support and<br />
Outreach Director<br />
Hannah Redford<br />
Data Entry Coordinator<br />
Lori Ritter<br />
Program Coordinator<br />
Todd Setter<br />
National Director<br />
Undy 5000 5K Series<br />
Nicole Sheahan<br />
Corporate Outreach<br />
and Fundraising Director<br />
Stephanie Student<br />
Community Engagement<br />
Coordinator<br />
Undy 5000 5K Series<br />
First row, L to R: Todd Setter, hannah redford, Melissa Bjorklund, Martha raymond. Second row, L to R: Alison ornitz, Donna Quinlan,<br />
Jasmine Greenamyer, Katie Matusik, Daniella Peña, Stephanie Student, Andrew Spiegel. Third row, L to R: Nancy Butterfield, laura Porter,<br />
Nicole Sheahan, Steve Cooper. Andrea Clay, Carol orr, Crawford Clay.<br />
Not pictured: randy henniger, Becky Kerner, Stephanie Marcos, hannah ornell, Chitra Panjabi, ervin Pinckney, Jose Mendoza Silveiras,<br />
Maura Molish, lori ritter.<br />
<strong>Colon</strong> <strong>Cancer</strong> <strong>Alliance</strong> <strong>2012</strong> <strong>Annual</strong> <strong>Report</strong> 41
<strong>Colon</strong> CAnCeR AllIAnCe<br />
1025 vermont Ave., nW - Suite 1066<br />
Washington, dC 20005<br />
toll-Free Helpline (877) 422-2030 | phone number (202) 628-0123<br />
www.ccalliance.org<br />
Federal tax Id #86-0947831