19.05.2013 Views

read the full 2012 Annual Report - Colon Cancer Alliance

read the full 2012 Annual Report - Colon Cancer Alliance

read the full 2012 Annual Report - Colon Cancer Alliance

SHOW MORE
SHOW LESS

You also want an ePaper? Increase the reach of your titles

YUMPU automatically turns print PDFs into web optimized ePapers that Google loves.

<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

Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!