read the full 2012 Annual Report - Colon Cancer Alliance

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read the full 2012 Annual Report - Colon Cancer Alliance

2012

Annual Report


About the Colon Cancer Alliance

The Colon Cancer Alliance (CCA) is

the leading national patient advocacy

organization dedicated to increasing

screening rates and survivorship for colon

cancer. Ask the hundreds of thousands of

people we help each year, and they will tell

you we are an active, caring community. We

know first-hand how devastating this cancer

can be. We also know it doesn’t have to be

this way.

We see a brighter future on the horizon.

Our programs are reaching more

communities, and more people are getting

screened and beating this disease. We know

that a future free of colon cancer isn’t just a

dream; it can be a reality. But, we can’t do it

alone. Our staff and army of volunteers are

committed to taking action both nationally

and locally through exciting and impactful

campaigns and events.

www.facebook.com/coloncanceralliance

@CCAlliance

OUR MISSION

The Colon Cancer Alliance is a community that provides hope and support to patients and their

families, while saving lives through screening, access, awareness, advocacy and research.

OUR VISION

At the Colon Cancer Alliance, our vision is for a world free of colon cancer, where education,

early detection and treatment lead to survivorship for all.

OUR VALUES

COMPASSION – We care, and we are on your team. Since our founding, we have been the

leader in peer support and encouragement. No one has to face this cancer alone.

RESPECT – We recognize the courage and the dedication of all who are fighting this disease

including survivors, families, the medical community, our partners and other cancer organizations.

We believe that mutual respect and collaboration are absolutely essential.

COMMITMENT – We are passionate about increasing survivorship and igniting change in the way

this disease is viewed and discussed. We will work tirelessly to realize our vision of a world without

colon cancer.

EDUCATION – We will continue to support research and position ourselves on the forefront of new

developments in colon cancer prevention and treatment and bring this knowledge to the public.

CONFIDENCE – We know we are making a difference, and our tenacity drives us onward.

We are inspired daily by the army of brave survivors in our ranks – living proof that colon cancer

can be beat.

Colon Cancer Alliance 2012 Annual Report 1


Table of Contents

2012 Impact Summary ...................................................4

A Letter from Our CEO ....................................................5

Colon Cancer At-A-Glance ..............................................6

Advocacy & Community Engagement ..........................7

NATioNAl ColoreCTAl CANCer AWAreNeSS MoNTh ................8

NATioNAl DreSS iN BlUe DAY .....................................................9

VoiCeS VolUNTeer & ChAPTer ProGrAM .................................10

MeeT oUr VolUNTeerS ............................................................11

NATioNAl CoNFereNCe ..........................................................12

SAPPhire AWArDS ....................................................................13

ColoN CANCer AlliANCe oNliNe ..........................................14

PATieNT ADVoCACY..................................................................15

CoMMUNiTY heAlTh PArTNerShiP GrANT ProGrAM ................16

Awareness ..............................................................................17

UNDY 5000 5K rUN/WAlK SerieS ............................................18

UNDY 5000 FUNDrAiSer SPoTliGhT ..........................................19

STArS Go BlUe BeNeFiT CoNCerT ............................................20

ColoN CANCer AlliANCe oNliNe STore ................................21

BlUe STAr ChAMPioN MAP .................................................. 22-23

CeleBriTieS GoiNG BlUe ..........................................................24

Support .................................................................................... 25

The BlUe NoTe FUND ............................................................... 26

BlUe NoTe FUND ChAMPioNS ................................................. 27

Toll-Free helPliNe .................................................................... 28

The BUDDY ProGrAM .............................................................. 29

MY CCA SUPPorT oNliNe CoMMUNiTY .................................... 30

Research ..............................................................................31-33

How You Can Help ...........................................................34-36

The Global Colon Cancer Alliance .................................. 37

Financials, Board & Staff ................................................... 38

FiNANCiAlS ............................................................................. 39

BoArD oF DireCTorS............................................................... 40

MeDiCAl AND SCieNTiFiC ADViSorY CoMMiTTee ....................... 40

oUr STAFF ............................................................................... 41

Colon Cancer Alliance 2012 Annual Report 3


2012 Impact Summary

550,000+

Individuals

Supported

In 2012, the Colon Cancer Alliance brought hope and support to more than

half a million patients, caregivers, survivors, family members and advocates

across the country. With the help of 19 major partners, we invested $2,490,565

in helping individuals and local communities through our screening, research,

support, financial assistance and other programs.

2

New Colon Cancer

Drugs Approved

by FDA

4 Colon Cancer Alliance 2012 Annual Report

$2.5

Million

Invested locally

16,000+

Helped by

our Patient

Support Team

19

Major

partners

2012 MAJOR ACCOMPLISHMENTS

$120,000

Given in Financial

Assistance to

Patients

11,850

Undy 5000 5K

Participants

in 17 Cities

600,000

500,000

400,000

300,000

200,000

100,000

0

IndIvIduAlS SuppoRted

165,413

2010

3,700+

Advocates

Engaged Across

All 50 States

338,783

2011

555,660

2012

$150,000

Awarded to

Screening and

Research Programs


A Letter from Our CEO

Dear Friends,

on our Facebook page, we recently posed this question to our followers: Would you rather devote your resources to preventing a

disease or curing it?

Without a doubt, it’s a tough question. When my mother was diagnosed with colon cancer, i would have given anything for a

cure. But the heartbreaking realization is that she wouldn’t have had cancer if she’d been screened early enough. Colon cancer is

one of the few cancers where we can be proactive – you might say the strongest defense is a good offense. Thanks to our army of

passionate supporters and tireless volunteers, 2012 saw us take a giant leap closer to our vision for a world without colon cancer,

where education, early detection and treatment lead to survivorship for all.

it has truly been a monumental year for our Colon Cancer Alliance family. our organization continues to grow as our mission takes

root and spreads locally, nationally, and now even globally, reaching some important milestones along the way. We hosted our

groundbreaking ninth National Conference on a hot button issue that has stumped the medical community, and we funded innovative

new research and screening programs. For the first time in six years, two new colon cancer drugs received FDA approval. Thousands

of people joined us in advocating to close a loophole in the Affordable Care Act’s Medicare coverage of colonoscopies – an

ongoing campaign in 2013. And thanks to supporters like you, we saw unprecedented involvement from individuals, schools,

hospitals and community groups “going blue” for National Colorectal Cancer Awareness Month.

i’m both humbled and inspired by what i’ve seen our network of staff, volunteers, advocates, patients and sponsors do in the past year.

Together, we’re saving lives. We’re working tirelessly to ensure that our children and grandchildren never know the pain of losing a

loved one to this disease. We haven’t yet arrived at that future, but the achievements of this year make it clear that we’re on our way.

in this 2012 Annual report, we’ve highlighted some of those achievements to show what ground we’re gaining in the fight against

colon cancer.

We won’t rest on the successes of 2012, though. As we welcome 2013, we will soldier on in our campaign against colon cancer.

We will join forces with legislators, researchers, regulators, prevention specialists, the business community, the medical community,

the 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.

Best wishes,

Andrew Spiegel

Chief Executive Officer, Colon Cancer Alliance

@CCAllianceCeo

Colon Cancer Alliance 2012 Annual Report 5


Colon cancer is

the second

leading cause

of cancer-related

death in the U.S.

6 Colon Cancer Alliance 2012 Annual Report

Colon Cancer At-A-Glance*

On average,

your risk is about

1 in 20, although

this varies widely

according to

individual risk

factors.

90% of new

cases occur in

people

50 or older.

People with a

first-degree relative

(parent, sibling or

offspring) who has

colon cancer have

two to three times

the risk of

developing the

disease.

There are currently

more than one

million colon cancer

survivors

in the U.S.

*Source: American Cancer Society


Advocacy &

Community

Engagement

”When I saw my brother’s classmates dressed in blue to support me, I broke

down in tears. It provided me with strength and understanding that I was

not battling this cancer alone. I will continue to participate in Dress in Blue

Day and do all that I can to spread awareness. Colon cancer is preventable,

treatable and beatable. I wish for a day when no one has to hear the words,

‘it’s colon cancer.’ This is possible through awareness and early screening.”

Ashley Havlena, 25

Stage III Survivor

Students and staff at David City High School in David City, Nebraska

wore blue for Ashley on Dress in Blue Day.

Colon Cancer Alliance 2012 Annual Report 7


10,000+

participants

31

days

10+

CCA Hosted

events

8 Colon Cancer Alliance 2012 Annual Report

NATIONAL COLOrECTAL CANCEr

AwArENESS MONTh

in March, we celebrated a record-breaking Colorectal Cancer Awareness Month, starting with National Dress in Blue Day and

the ringing of the NASDAQ closing bell. Participation reached an all-time high as more companies, organizations and individuals

than ever before rolled up their sleeves to fight this disease and raise awareness in their communities through educational and

fundraising events.

our army of Voices volunteers nationwide worked tirelessly, hosting events, distributing materials and enlisting the help of community

leaders in elevating the profile of colon cancer.

MARCH 1 Kickoff with the NCCrT* Family PlZ

Campaign and Screen This Too! PSA

MARCH 2 National Dress in Blue Day

MARCH 3 Sacramento Undy 5000 5K

MARCH 6 CCA rings the NASDAQ Closing Bell

MARCH 6 Stars Go Blue Benefit Concert

MARCH 7 Understanding Current &

Future legislation Tele-Chat

March also saw the expansion of our community screening efforts through our partnership with the makers of Dulcolax. More than

eight million specially-marked packages of the product sold in major retailers, with a portion of the sales supporting our Community

Health Partnership Grant Program.

Thanks to the efforts of our volunteers, the following landmarks also went blue in honor of March and National Dress in Blue Day:

• State House Dome – Providence, rhode island

• PECO Building Crown Lights – Philadelphia, Pennsylvania

• Wrigley Building – Chicago, illinois

MARCH 10 San Diego Undy 5000 5K

MARCH 16 Petition to Turn the White house Blue Closes

MARCH 28 Unite2Crush Colon Cancer rally

MARCH 28 CBS healthWatch Colon Cancer/

Digestive health Webcast

MARCH 31 St. louis Undy 5000 5K

• Borough Hall – Brooklyn, New York

• LaVeque Tower – Columbus, ohio

• Niagara Falls – Niagara Falls, New York

*National Colorectal Cancer roundtable


NATIONAL DrESS IN BLuE DAy

The National Dress in Blue Day program was a fantastic success again this year! on March 2, 2012, we saw a record

number of individuals, healthcare providers, businesses and community groups across the country wear blue and talk to others

about the importance of colon cancer screening.

Through Facebook, Twitter and email, participants submitted photos and let us know how and why they were going blue.

To help participants launch screening, awareness, educational and fundraising initiatives, we provided numerous resources,

including awareness and educational merchandise, free downloads and outreach materials, through our website.

Funds raised through the 2012 National Dress in Blue Day program benefitted colon cancer patients in need through our

Blue Note Fund.

orANGe reGioNAl MeDiCAl CeNTer - MiDDleToWN, NY

The orange regional Medical Center celebrated Dress in Blue Day 2012 by inviting all

staff to dress in blue and wear stickers downloaded from the Colon Cancer Alliance website.

Colon cancer fact sheets were hung throughout the hospital and staff handed out Buddy

bracelets and pins.

thank you to Salix, Amgen and Genentech for generously sponsoring the 2012 national Dress in Blue Day.

SAM hoUSToN STATe UNiVerSiTY - hUNTSVille, TX

With volunteer Vicki Barrilleaux, enrollment Management, Colleges Against Cancer, Bearkat one

and the Bursar office at Sam houston State University participated in Dress in Blue Day 2012.

Staff paid $5 to wear jeans and helped raise $500.

$70,000+

Raised

125+

photos

Submitted

36

Fundraising

events Held

Colon Cancer Alliance 2012 Annual Report 9


375+

volunteers

30

States

5

Chapters

Preventable,

Treatable,

Beatable!

10 Colon Cancer Alliance 2012 Annual Report

VOICES VOLuNTEEr & ChApTEr prOGrAM

From speakers to advocates to fundraisers and more, the Voices Volunteer and Chapter Program rallies

communities to bring our mission to the local level. Our Voices program boasts five official chapters

and nearly 400 volunteers and advocates making a difference across the country.

Our incredible volunteers spearheaded projects for our Dress in Blue Day program, lit local landmarks blue

for National Colorectal Cancer Awareness Month, and organized 5K races to benefit community screening and

treatment programs. These efforts and more helped us to reach more people than ever before.

We are proud to be working alongside such dedicated and inspiring advocates. Their hard work and passion

are truly leading our vision for a future free of colon cancer!

Get Screened

for Colon

Cancer!


Meet Our VOlunteers

“Knowledge is power, and since many

members of our medical team don’t have

firsthand knowledge of what we’re going

through, it’s up to us to reach out through

whatever means we have to pass along

all the tips, stories and encouraging words

we can to our fellow survivors. The CCA’s

Buddy Program, the National Conference

and webinars help us do this, as do our

contacts with support groups in our areas.

helping others with their questions and

concerns certainly relieves their anxiety to

some extent, and helps them understand

they’re doing all they can to continue

living with colon cancer.”

- Gordon Cole, 63

Stage IV Survivor, CCA Buddy, Voices Volunteer

Gordon Cole and his oncologist, Dr. Michael

Morse, from Duke University Medical Center.

“i initially became

involved with the

Colon Cancer Alliance

in 2005. i wanted

to connect with other

patients and survivors

to validate all of

the mixed emotions

i experienced.

i wanted reassurance

of survival. And

most importantly,

i wanted to empower

myself with as much

information as i could

garner about chemo’s side effects. i found all

of this through the CCA, gaining strength and

solace through the online friendships formed by

our common bond. i jumped at the opportunity

when asked several years ago to volunteer as

a CCA Buddy. it’s my way to give back to the

very same community who helped remind me

of the light through some of my darkest days.”

- Grace De La Rosa, 45

Stage III Survivor, CCA Buddy

After Grace conquered her cancer, she was able to get

back to her active lifestyle, including participating in

fitness competitions and spending time with her two

children.

“i recently became a CCA Buddy, which

i find very rewarding. i wanted to offer

hope and information to people who

are on this cancer journey, and to just

talk with people. Sometimes all we need

is someone who knows firsthand what

you’re going through. The thing i most like

to stress to everyone is to stay positive.

You are not a statistic!”

- Roddy Belford, 57

Stage III Survivor, CCA Buddy

Roddy with his wife, Sharon, who urged him to

visit the emergency room when he was having

abdominal pain, prior to being diagnosed.

Colon Cancer Alliance 2012 Annual Report 11


190

Attendees

54

Speakers &

Facilitators

34

States

Represented

2

days

the 2012 national Conference

was generously supported by Salix,

Genentech, Amgen, phRMA, Genomic

Health, MItA, Morphotek, Spectrum

pharmaceuticals, Ambry Genetics,

American College of Radiology,

BIo, Cancer treatment Centers of

America, Given Imaging and Sirtex.

12 Colon Cancer Alliance 2012 Annual Report

NATIONAL CONFErENCE

We hosted our National Conference, Redefining Colorectal Cancer Survivorship:

Live Your Best Life, in Baltimore, Maryland on July 20-21, 2012. This year, the

conference kicked off with a groundbreaking pre-conference research symposium,

Colorectal Cancer Diagnosis Under 50: Trends and Implications for the Future.

The two-day event brought together nearly 200 patients, survivors, family members,

advocates, experts and healthcare professionals from across the country.

The conference’s keynote presentation, “Beating Cancer and Staying healthy:

The Path to recovery” was delivered by Brenda elsagher. A comedian and colon

cancer survivor herself, Brenda kept conference attendees in stitches while dispensing

wisdom on living through diagnosis and treatment. her keynote address was followed

by several panel and breakout sessions. National experts covered a wide range

of topics, including integrative therapies, new treatments and the latest research

on colon cancer.

The 2012 National Conference was a huge success, with 100% of conference attendees indicating it was a valuable experience.

Thanks to the institute for Continuing healthcare education, we were able to offer continuing education credits to healthcare

professional attendees.

“Until the conference, I had only met two other people

that had been diagnosed with colon cancer. It was

an awesome experience to talk about issues, feelings

and concerns without getting uncomfortable glances

or fidgeting during the conversation. Everything was

understood without judgment or pity. I met some amazing

people during that weekend and I will carry the memory

of them with me forever.”

– Elisa Ellis, Attendee and Survivor

“The 2012 National Conference

was a life-changing experience.

Until the conference, I was totally

unaware of clinical trials and how

they could benefit me. I’m happy

to report that starting Monday,

August 27th I will start phase 1

of a clinical trial at Robert Wood

Johnson University.”

– Sandra Roberts, Attendee and Survivor


SApphIrE AwArDS

The Colon Cancer Alliance Sapphire Awards were created to

recognize and celebrate innovators and leaders in the fight against

colon cancer. We were proud to present and acknowledge this year’s

recipients at the 2012 National Conference.

Awardees pose with Colon Cancer Alliance staff and other patient advocates during the 2012 National Conference.

2012 Colon Cancer Alliance

Sapphire Awards

SAPPHIRE DISTINGUISHED SERVICE AWARD

Teri Griege of St. Louis, Missouri

Recognizes an individual who has made outstanding contributions

to the patient community and has made an impact in advocacy,

screening and prevention of colon cancer.

SAPPHIRE VISIONARy AWARD

Nancy Roach of Hood River, Oregon

Recognizes an individual who is committed to making a

difference in colon cancer through extraordinary contributions at

both the local and national levels.

ExCELLENCE IN PATIENT CARE SAPPHIRE AWARD

Violeta Gnatz, BSN, CGRN of Plainfield, Illinois

Recognizes a distinguished healthcare professional who has

gone above and beyond to make a positive contribution to the

treatment of colon cancer.

SAPPHIRE CORPORATE AWARD

Northside Hospital

Recognizes leadership of a business or healthcare organization

that works to advance the treatment, screening, awareness and

education of colon cancer on a national platform.

SAPPHIRE AWARD FOR BEST UNDy 5000 MANAGEMENT

CCA Voices of Central Arizona

Recognizes a Colon Cancer Alliance Undy 5000 Management

Team that celebrates survivorship and promotes colon cancer

screening and awareness in the local community.

Colon Cancer Alliance 2012 Annual Report 13


2,340

Website

visits per day

600+

Webpages

16,000+

Facebook

Fans

10,000+

twitter

Followers

14 Colon Cancer Alliance 2012 Annual Report

COLON CANCEr ALLIANCE ONLINE

WEBSITE

Today, the internet is the go-to source for information. With more than 600 informative pages, our website offers answers to the

complex questions frequently asked by those affected by colon cancer. We provide information about screening, treatment, quality

of life and financial issues, as well as a library of educational videos, chats, seminars and webinars. With nearly one million visitors

in 2012, our website allows people to get involved in national programs and local events, as well as connect with other colon cancer

patients, survivors and caregivers.

We also expanded our Spanish outreach program in 2012 by providing an increased amount of information on colon cancer,

its symptoms and screening options entirely in Spanish.

SOCIAL MEDIA

18,000

16,000

14,000

12,000

10,000

8,000

6,000

4,000

2,000

0

302

FACeBook GRoWtH

3,431

7,904

16,180

2009 2010 2011 2012

12,000

10,000

8,000

6,000

4,000

2,000

0

tWItteR GRoWtH

347

1,448

10,350

2010 2011 2012

*Note: All statistics are inclusive across Colon Cancer Alliance platforms.


pATIENT ADVOCACy

3,700+

Advocates

engaged

LEGISLATIVE GOALS

• Increase access to colon cancer screening and treatment

• Educate survivors about issues that impact them

• Make colon cancer funding and research a Congressional priority

LEGISLATIVE SPOTLIGHT

The Removing Barriers to Colorectal Screening Act (H.R. 4120)

The Problem

• The Affordable Care Act (ACA) went into effect January 2012

• Requires all preventive tests to be covered by insurance

• Included a loophole changing a colonoscopy that finds polyps

from a preventive test to a diagnostic test, causing Americans

to wake up from the exam owing up to $1,000 in copay fees

The Bill

357

Congressmen

Contacted

7

trips to

Capitol Hill

12

Bills

Backed

Ceo Andrew Spiegel speaks at our Unite2Crush

Colon Cancer rally.

• Introduced by Representative Charlie Dent (R-PA) in March 2012

• Seeks to close the ACA loophole to ensure all colon cancer screening tests are covered by Medicare

How We Took Action

• Informed 30,000+ members through email about the issue

• Created an action alert through which advocates could directly contact their representative about this issue

• Engaged 1,000+ advocates to reach out to more than 350 House representatives

• Secured 45 bill cosponsors

• Prepared to reengage this issue with newly elected officials in 2013

2012 ADVOCACY MILESTONES

JANUARY 1 Affordable Care Act (ACA) goes into effect

FEBRUARY 16 CCA launches a petition to turn the White

House blue, gaining 2,500 signatures via

WethePeople.com

FEBRUARY 27 CCA speaks at the Biosimilars Forum

on Capitol Hill

MARCH 1 Rep. Charlie Dent introduces H.R. 4120

MARCH 1 CCA supports the release of the 2012

Colorectal Cancer Legislation Report Card

MARCH 7 CCA presents the “Affordable Healthcare-

Understanding Current and Future

Legislation” Tele-Chat

MARCH 28 CCA hosts the Unite2Crush Colon Cancer

Rally in partnership with Chris4Life

MAY 10 CCA signs on to support Food and Drug

Administration Safety and Innovation Act

(FDASIA)

JUNE 28 ACA upheld by the Supreme Court

JULY 11 CCA joins the Coalition for Accessible

Treatment

AUGUST 3 FDA approves Sanofi-Aventis’s Zaltrap for

metastatic colon cancer patients

SEPTEMBER 26 CCA launches action alert for H.R. 4120

SEPTEMBER 27 FDA approves Bayer’s Stivarga for

metastatic colon cancer patients

OCTOBER 30 CCA joins the Campaign for Modern

Medicine

NOVEMBER 16 CCA joins the ASP Coalition

Colon Cancer Alliance 2012 Annual Report 15


2,625

Served in 2012

10+

partners to date

$150,000

Awarded locally

16 Colon Cancer Alliance 2012 Annual Report

COMMuNITy hEALTh pArTNErShIp

GrANT prOGrAM

in 2012, we started the Community Health Partnership Grant Program to provide funding to partners who help further our

mission locally in Undy 5000 5K communities. From providing screening tests to the underinsured to conducting research,

the CCA partners with organizations, companies or individuals who:

• Provide services that promote screening access

• Provide treatment access

• Conduct research that advances quality of life concerns and addresses barriers to screening

Market Program Focus Partner and Program Name

Number to

be served

Atlanta, GA Screening northside Hospital, Colorectal Cancer prevention & Assistance program 100

Buffalo, nY Screening Independent Health Foundation, Good for the neighborhood 200

Cincinnati, oH Screening Academy of Medicine of Cincinnati, project Access 300

dallas, tX Research

Mary Crowley Cancer Research Centers, Jodie kline Colon Cancer

Research program

denver, Co Screening Colorado Colorectal Cancer Screening program 450

long Branch, nJ Screening Monmouth Medical Center 300

nashville, tn treatment Colon Cancer Alliance, Blue note Fund 400

philadelphia, pA Screening

2012 PARTNERS

Abramson Cancer Center at the university of pennsylvania,

West philadelphia GI outreach & Access program

piedmont triad, nC Screening Forsyth Medical Center Foundation, Community Care Center 100

phoenix, AZ treatment Arizona department of Health Service, Fit at Fifty HealthCheck 7

Sacramento, CA Screening California Colorectal Cancer Coalition (C4) 500

San diego, CA Screening California Colorectal Cancer Coalition (C4) 1000

tampa, Fl Screening university of South Florida B.R.I.d.G.e. Clinic 55

Washington, dC Screening dC Cancer Consortium, Screen for life 1000

25

150


Awareness

Stephanie Godri-Johnston was

a devoted daughter, sister, wife

and mother. But at the young

age of 29, she was diagnosed

with stage IV colon cancer.

After a valiant, 18-month battle,

she passed awayin May of

Stephanie’s brother, Stephen, presents the big check to Colon Cancer Alliance

staff members Ali Ornitz, Nicole Sheahan and Hannah Redford.

2012. To honor Stephanie’s charitable spirit and love of

running, her family and friends held the first annual Steph’s Fall

5K in Forty Fort, Pennsylvania in October to raise awareness about

this devastating disease. Hundreds came out for the race and

$1,500 was raised in Stephanie’s name for the Blue Note Fund.

Colon Cancer Alliance 2012 Annual Report 17


17

Cities

$1.7

Million

Raised

11,850

Registered

participants

500

Survivors

Honored

the 2012 Undy 5000 series was

sponsored nationally by Boehringer

Ingelheim, the maker of dulcolax;

Salix pharmaceuticals; Amgen

oncology; Genentech; ethicon

endo-Surgery and Bayer HealthCare.

18 Colon Cancer Alliance 2012 Annual Report

uNDy 5000 5K ruN/wALK SErIES

our Undy 5000 5K series fuses community involvement, screening initiatives and media buzz to

bring the hammer down on colon cancer. This unique event is raising eyebrows and awareness

by jumpstarting conversations, motivating people to get screened, celebrating survivors and

remembering those lost to the disease.

The series provokes discussion in unconventional ways. For instance, instead of the traditional

race day t-shirt, participants receive a pair of commemorative boxer shorts – a tongue-in-cheek

reference to the area affected by colon cancer. And although the Undy 5000 is a fun event, its

serious message – screening can save your life – is not lost. A heartwarming ceremony follows

the run, recognizing attending survivors and honoring those we’ve lost.

This year, the Undy 5000 visited 17 U.S. cities and, with the help of 12,000 supporters,

raised more than$1.7 million for local screening efforts, patient support services and awareness

programs.

By creating an open dialogue and a sense of camaraderie among those affected by colon

cancer, the Undy 5000 is beating this disease, one step at a time.

Triplets for Tony, participants at the Philadelphia Undy 5000,

dress up and run in honor of a loved one lost to colon

cancer.

Participants dress up in Batman costumes at the 2012

San Diego Undy 5000.


Tess Fraser –

Barb’s Beautiful

Booties –

Buffalo

Team Poop Strong – Phoenix

Julie Pope & Kathy Bowman – Blue Mooners – Piedmont Triad

uNDy 5000

FuNDrAISEr

SpOTLIGhT

Blue Ribbon Booties – San Diego

Brian Mansfield –

Mansfield United –

Nashville

Jane Iturrino –

Fight the Lyon –

Jersey Shore and Philadelphia

Ethicon Endo-Surgery – Team Sedation – Cincinnati

ShopRite – Jersey Shore

Colon Cancer Alliance 2012 Annual Report 19


Charlie Kelley

Blue Note Fund Founder

Grammy-Nominated Artist

CCA Board Member

Charlie Kelley knows

all too well how hard

the fight against

cancer can be.

A survivor himself,

he leapt into action

after his recovery by

creating the successful

Stars Go Blue Benefit

Concert - but he

didn’t stop there.

Understanding the

financial burdens of

a colon cancer diagnosis, Charlie made it his

mission to help those patients struggling to

make ends meet. The Blue Note Fund started

awarding grants in 2011 and has helped

more than 800 families to date.

We extend our deepest gratitude to Charlie

and his wife, Nan. Thank you both for your

extraordinary leadership and dedication.

“When you’re fighting cancer, the last

thing you want to think about is a bill

you can’t pay.”

– Charlie Kelley

20 Colon Cancer Alliance 2012 Annual Report

STArS GO BLuE BENEFIT CONCErT

213

Attendees

7

Stars performed

$45,000

Raised

For the fourth consecutive year, we returned to Nashville, Tennessee for our Stars Go Blue Benefit Concert on

March 6, 2012.

exile headlined to a sell-out crowd at the Country Music hall of Fame’s Ford Theater, with Trace Adkins making a

special appearance for the band’s iconic hit, “Kiss You All over,” followed by Wade hayes joining in for “Super

love.” hayes, who was undergoing treatment for stage iV colon cancer, received a standing ovation before

chatting with the crowd openly and emotionally about his diagnosis, treatment and the importance of screening.

After the show, the audience mingled with the artists at a reception and bid on guitar stools autographed by the

performers. The event was a great success and raised more than $45,000 to help patients in need through the

Blue Note Fund. Special thanks to our star volunteers Shelia Bates, Amy Gregory, Candace Dean, Joy Mangrum,

Jane Kennedy and Jennifer Murray.

The 2012 Stars Go Blue Benefit Concert featured Trace Adkins (not pictured), Exile’s Steve Goetzman, Marlon Hargis, J.P. Pennington, Sonny Lemaire, GAC’s Nan

Kelley, Wade Hayes, Exile’s Les Taylor and Charlie Kelley (pictured left to right).

the 2012 Stars Go Blue Benefit Concert was sponsored by Amgen, Salix, Genentech and StopColonCancernow.com, powered by Amsurg.


COLON CANCEr ALLIANCE ONLINE STOrE

our online store features more than 60 merchandise products and education materials, from blue star bracelets and t-shirts to

awareness posters and leaflets. The store also includes free downloadable materials, which make it easy for fundraisers and

advocates to print and distribute. We also offer materials in Spanish as part of our hispanic outreach program.

This year, we added inflatable colons to the

awareness materials catalogue, offering this unique

educational tool in both a giant and mini size.

MOST POPULAR STORE ITEMS

Colon Cancer Awareness Bracelet

• Small Blue Star Lapel Pins

• “Ask Me Why I’m Blue” Buttons

• Blue Star Temporary Tattoos

• CCA At-A-Glance Leaflets

MOST POPULAR FREE DOWNLOADS

• Dress in Blue Day Flyer

Colon Cancer Treatment Options

• Dress in Blue Day Sticker Template

Colon Cancer Fact Sheet

• “Ask Me Why I’m Blue” Sticker Template

Shop now at www.ccalliance.org/shopcca

Volunteer Janelle hill shows off the giant inflatable colon at an Arizona health fair.

Volunteer Vanessa Ghigliotty stops by the merchandise booth at the 2012 National Conference.

47,051

Items ordered

60

Store Items

1

Giant Inflatable

Colon

Colon Cancer Alliance 2012 Annual Report 21


Roanne’s Race

Craig Schwartz’s

Marathron

Road Warriors

22 Colon Cancer Alliance 2012 Annual Report

Heart of

Biddeford

BLuE STAr

ChAMpION

MAp


1. Regina Hersey Memorial: $20,550

2. Ina Rose: $12,000

3. Blue Ribbon Snow Tour: $10,000

4. Road Warriors: $10,000

5. Fiesta Azul: $8,700

6. Roanne s Race: $8,500

7. Craig Schwartz s Marathon: $6,736

8. Northeast Digestive Health Center s

Highway to Health Colon Cancer

Awareness Event/Ride-In: $6,638

9. Rose Milardo Old Saybrook

Middle School Walk-a-thon: $6,081

10. Tony Elliot Memorial Bowling Tournament:

$5,190

11. Heart of Biddeford 5K: $4,170


Ina Rose

Rose Milardo Old Saybrook

Middle School Walk-a-thron

Blue Ribbon Snow Tour

Regina Hersey

Memorial

Fiesta Azul

Colon Cancer Alliance 2012 Annual Report 23


CELEBrITIES

GOING BLuE

FEBRUARY

• Taylor Swift donates signed CD for CCA celebrity auction

• Jon Stewart donates VIP tickets for CCA celebrity auction

• CCA volunteer Vanessa Ghigliotty is featured on the Dr. Oz Show

MARCH

• Times Square plays our Screen My Colon! PSA

• Fashion Designer Carmen Marc Valvo donates a gown

for CCA celebrity auction

• Miss Texas United States organizes a Dress in Blue Day

event with her sorority, Tri Delta

• Exile, Trace Adkins and Wade Hayes play at the CCA’s

Stars Go Blue Benefit Concert

• The CCA partners with CBS HealthWatch for a

webinar moderated by Travis Stork of The Doctors

• St. Louis Rams cheerleaders cheer on runners at the

St. Louis Undy 5000 5K

APRIL

• Senator Mark Grisanti attends the Buffalo Undy 5000 5K

JUNE

• The Indy 500 plays our Screen My Colon! PSA to 1.4 million

at the Indianapolis Motor Speedway

• Miss Colorado United States attends the Denver Undy 5000 5K

• Recording artist Stefanie Johnson performs at the 2012 National

Conference’s Blue Party

• The CCA partners with Millennium Entertainment on A Little Bit

of Heaven, featuring Kate Hudson, Whoopi Goldberg and

Gael Garcia Bernal

• CEO Andrew Spiegel meets with the Richard Petty Racing Team

and Foundation

24 Colon Cancer Alliance 2012 Annual Report

We love to see celebrities getting involved and going blue! We work throughout the year

to engage A-listers and other well-known advocates to speak out about colon cancer.

Here are a few of the big names who got involved this year:

JULY

• Congressman Frank Palone attends the

Jersey Shore Undy 5000 5K

SEPTEMBER

• Katie Couric tweets about the Undy 5000 5K

• The CCA meets Gabby Douglas,

Eric Stonestreet and Donald Faison at

Stand Up 2 Cancer

• Wade Hayes announces he will donate

100% of proceeds from his new single,

“Is It Already Time?” to the CCA

• Reba McEntire tweets about Wade Hayes’

new single and the CCA

• The Dixie Chicks tweet about Wade Hayes’

new single and the CCA

OCTOBER

• Grammy-nominated artist and CCA Board Member Charlie Kelley and

his wife and GAC Top 20 host, Nan Kelley, spearhead the Nashville

Undy 5000 5K

• Music critic and USA Today columnist Brian Mansfield runs the Nashville

Undy 5000 5K

NOVEMBER

• CCA volunteer Candace Henley is interviewed on

the Steve Harvey Show

• Alan Jackson announces he will donate 100%

of proceeds from the sale of his photographic

collection, Seasons of Sweetbriar, to the CCA’s

Blue Note Fund

.


Support

“The My CCA Support Online Community is a source of

inspiration and education in my odyssey of understanding and

living with stage IV colon cancer. I love this group and want

everyone with a connection to colon cancer to find My CCA

Support and the Colon Cancer Alliance. I always encourage the

staff at my cancer clinic to direct patients to these great resources.”

- Randall Cox, 57

Stage IV Survivor

My CCA Support Member

Randall and his wife, Susan Caulfield. Randall is sporting his CCA cap!

Colon Cancer Alliance 2012 Annual Report 25


2,500

Applicants

400

Grants Awarded

$120,000

Given to

patients in need

26 Colon Cancer Alliance 2012 Annual Report

ThE BLuE NOTE FuND

The emotional and physical stress of a cancer diagnosis is almost unimaginable. Add to this the financial demand of medical bills

and other treatment-related costs, and the stress can be completely overwhelming. Many patients are simply unable to meet the cost

of having cancer.

Colon Cancer Alliance Board member and four-time Grammy nominee Charlie Kelley

knows firsthand the pressure of dealing with colon cancer. he founded the Blue Note

Fund to help relieve this pressure for patients in treatment. The program launched in 2011,

providing much-needed financial relief to help offset the costs of treatment. Selected

patients are awarded a one-time grant of $300 – enough to help pay down some bills

and, most importantly, provide a glimmer of hope in a difficult time.

Thanks to our generous supporters, the Blue Note Fund is making a tangible difference

for the patients and families who have been devastated by this disease.

“I just wanted to say thank you with all my heart. I just

received the check from the Blue Note Fund, and it

couldn’t have come at a better time. My car’s starting to die

on me, and I have to get back and forth to the hospital. I still don’t have

insurance, and I still don’t work because I’m in treatment and I’m just beat.

This check means everything to me. I’m so blessed by God that you guys

awarded me this, and I’m so grateful. Thank you so very, very much.”

- Karen Nilson, 59

Stage III Survivor, 2012 Blue Note Fund Awardee


BLuE NOTE

FuND

ChAMpIONS

Wade Hayes

Colon Cancer

Tribute Fund:

$5,780

Alan and

Denise Jackson:

$21,450

Team Britton: $15,000

Dave Platfoot Foundation: $2,500

Max Bracero Crabbing for Cancer Memorial Fund: $4,045

Reason to Party: $15,000

Gail Gadekar: $15,000

Debby Hudson

Colon Cancer Foundation:

$4,000

Colon Cancer Alliance 2012 Annual Report 27


“After being diagnosed

with stage I colon cancer,

I called the Colon Cancer

Alliance. The representative I spoke

with was intent on keeping me calm

and grounded. The Helpline call was

crucial in what I needed to know about

my prognosis and what my next steps

might be. Would I need chemo? What

should I be eating? On the other end

of the phone I found someone who

could not only relate to me but gave me

information that was crucial to what I

needed to know as a newly diagnosed

colon cancer patient.”

Janell Richison, 49

Stage I Survivor

Janell and her son, Alemnehe Lemma, vacationing

in Puerto Rico four months after her diagnosis.

28 Colon Cancer Alliance 2012 Annual Report

TOLL-FrEE hELpLINE

10,859

Callers

Assisted

4

Staff

Members

154,238

Minutes Spent

on the phone

This year, more than 10,000 patients and caregivers turned to our free helpline when they needed

answers to difficult questions or a listening ear.

our helpline is staffed by our caring and knowledgeable Patient Support team, who is trained to

support those with cancer and manage the wide range of emotions callers may be experiencing.

From providing guidance to the newly diagnosed to connecting patients and their families to the

Colon Cancer Alliance’s support services, our helpline staff sets the standard for expert and

compassionate support.

And with each passing year, more people are taking advantage of this free service. in fact, our

helpline call volume has increased a notable 67% since 2011.

OUR HELPLINE STAFF ANSWERS qUESTIONS ABOUT

• Screening tests

• Standards of treatment

• The latest treatment options and treatment protocols

• Clinical trials and registries

• The body’s reactions to surgery and treatment

• Financial, insurance and reimbursement issues

Call our Helpline any time at (877) 422-2030. Calls are answered live from

9:30 am to 4:30 pm ET, Monday through Friday.

the Colon Cancer Alliance toll-free Helpline is sponsored by Genentech, Sanofi, Amgen, Bristol-Myers Squibb, Salix pharmaceuticals and

Spectrum pharmaceuticals.


ThE BuDDy prOGrAM

Colon Cancer Alliance Buddies are colon cancer survivors, caregivers, family and friends with experience and compassion.

They know what it’s like for the newly diagnosed because they’ve been there too.

Personalized training is provided for new Buddies by our Patient Support staff, ensuring each mentor is vetted and well-equipped

to provide support for their Buddy match.

Darlene and her nephew, Devonta, pose with

the Chicago Wolves Hockey team mascot.

BUDDIES ARE MATCHED BASED ON

• Stage of Diagnosis

• Age

• Gender

• Primary Concerns

We’re proud to say many of our members

have formed ongoing, mutually supportive

friendships through this unique program.

“Buddies are there to listen, encourage and

share our survival stories. By doing this, we are giving

the patient a sense of hope that they can win this battle too.

For survivors and caregivers, Buddies offer support and a

listening ear. This is useful because, at times, caregivers are

unaware how to communicate, help or assist a loved one.

Having someone there to direct and guide you through these

situations can make everyone’s life a lot easier!”

- Darlene Wade, 52

Colon Cancer Survivor, CCA Buddy, Voices Volunteer

300

Requests

38

States

257

Buddies

Colon Cancer Alliance 2012 Annual Report 29


3,200+

Members

100+

daily users

9

Moderators

24/7

online

Chat Room

30 Colon Cancer Alliance 2012 Annual Report

My CCA SuppOrT ONLINE COMMuNITy

Formerly My CRC Connections, the My CCA Support online Community celebrated

its fifth year in 2012 with a new look, expanded resources and more members than ever.

My CCA Support empowers those affected by colon cancer to find and communicate

with one another easily and conveniently.

PATIENTS, SURVIVORS AND CAREGIVERS FROM AROUND

THE WORLD CAN

• Seek practical advice from peers who share a similar diagnosis

• Provide and receive peer support through real-time chats in both English and Spanish

• Share personal stories and experiences

• Be part of a community of peers

• Find support and comfort

• Search for other members by diagnosis, stage and location

3500

My CCA Support members can participate in live chats, webinars

and message boards, and can create personal pages with photos, 3000

videos and blogs. New features include Volunteer Spotlights,

information pages in Spanish, resource and education pages.

2500

To join or learn more, simply visit

www.MyCCASupport.org.

2000

1500

1000

500

0

934

MeMBeR GRoWtH

1,601

2,009

2,550

3,200

2008 2009 2010 2011 2012

the My CCA Support online Community is sponsored by Bristol-Myers Squibb, Salix pharmaceuticals and Amgen.


esearch

Roanne Cairel was passionate and active,

and when she was diagnosed with stage

III colon cancer at just 19 years old, she

was determined to fight. Despite

Roanne’s bright spirit, she lost her

battle after five years. In commemoration

of Roanne, her friends and family hosted

the inaugural Roanne’s Race 5K/10K in

In November, Roanne’s friends and family joined at

Robertson Park in Livermore, California to honor their hero.

November, where nearly 300 people ran and raised $8,500 to support

the Colon Cancer Alliance’s research initiatives. Specifically, this donation

is helping educate healthcare providers about the need to better

diagnose colon cancer in individuals under 50 years old.

Colon Cancer Alliance 2012 Annual Report 31


We’re committed to a world free of colon cancer.

That’s why we conduct and support innovative research that

increases screening rates for all and improves people’s lives.

Our research programs and activities include

MATCHING PATIENTS WITH FRONT-LINE

RESEARCH TRIALS

Programs like our Clinical Trial Matching Service connect patients to

institutions developing cutting-edge treatments and new colon cancer

therapies. Through clinical trials, doctors and researchers are able to

develop and improve lifesaving colon cancer treatments.

FUNDING LOCAL RESEARCH

The Community Health Partnership Grant Program provides funding

to community partners who help further our mission to provide hope

and support to patients and their families, while saving lives through

screening, access and research. The grant program is funded by our

Undy 5000 5K run/Walk.

COLLABORATING ON RESEARCH PROJECTS

We work to improve quality of life for survivors and increase

screening rates by conducting research studies on colon cancer

screening barriers, treatment outcomes and survivorship issues.

We have partnered with organizations and companies to conduct

various types of research including national surveys, white papers

and abstracts.

32 Colon Cancer Alliance 2012 Annual Report

Clinical Use of CT Colonography (CTC) for Colon Cancer

Screening in Military Training Facilities and Potential Impact

on HEDIS ® Measures Conducted in partnership with

Walter Reed National Military Medical Center

KEy FINDINGS

1. CTC is actively being used for colon cancer screening across military

treatment facilities.

2. inclusion of CTC as a heDiS ® -compliant colon cancer screening test

has the potential to significantly increase healthcare system compliance

for National Committee for Quality Assurance (NCQA) colon cancer

screening measures.


Colonoscopy Perceptions Survey Project Conducted with

Salix Pharmaceuticals

KEy FINDINGS

1. People are familiar with colonoscopy as a screening test: Many had

gotten a colonoscopy, but 39% of participants who had never had a

colonoscopy indicated they had been recommended for one.

2. easiest and hardest part of a colonoscopy: 50% of participants who had

a colonoscopy indicated the easiest part of the colonoscopy was the

procedure itself. The bowel preparation was considered the hardest part

by 73% of participants.

3. Top reasons why people haven’t gotten a colonoscopy: Age is the most

frequently cited reason for participants 49 years or younger not having a

colonoscopy. As for those 50 years and over, fear is the most frequently

cited reason.

Closing the Gap in Colon Cancer Screening Conducted

with Quest Diagnostics

KEy FINDINGS

1. Time constraints, fear and cost concerns are major impediments to

screening: Among patients who said fear prevented them from being

screened by any method, 61% said unpleasant bowel preparation was

what deterred them most.

2. A large number of respondents did not adhere to guidelines calling for

periodic testing after an initial screening: of those between 60 and 70

years old, 33% claimed they had been screened once and 22% said

they had been screened twice. The findings suggest that some patients,

after being screened once, are lulled into a false sense of security and

fail to undergo additional testing.

3. Diagnostic advances may improve screening rates: 3 out of 4 (75%)

survey respondents said they would be screened more frequently if a

blood test for colon cancer screening were available.

Research Focus: The Under 50 Issue

in 2012, we worked with renowned doctors and leaders in the field of cancer

research to address the steady rise in patients under the age of 50 who are

diagnosed with colon cancer.

This age group faces unique challenges to a cancer diagnosis, from work-related

issues to complications in having children, managing a work-life balance

and dealing with the stigma of colon cancer as an “older person’s disease.”

We are excited to announce that this research will be made available through

a groundbreaking White Paper in 2013.

The Increasing Incidence of young Onset Colon Cancer:

Implications for Primary Care Physicians

KEy FINDINGS

1. Although colon cancer incidence and mortality rates have been decreasing

among individuals age 50 and older, approximately 10% of colon cancer

cases are young-onset (i.e., occurring in individuals under age 50) and the

incidence of young-onset colon cancer is increasing significantly each year.

2. Despite these histological characteristics and a greater likelihood of

presenting with metastatic disease, stage-specific survival rates in youngonset

patients are generally at least equal to those of their later-onset

counterparts.

3. Physicians can improve identification and treatment of young-onset colon

cancer patients by remaining aware that this disease is increasingly

occurring in young adults and by using a two-pronged approach that

addresses both screening and symptom evaluation.

YOU CAN SUPPORT RESEARCH:

www.ccalliance.org/research

You can support colon cancer research through the CCA.

Please contact Nicole Sheahan at (202) 628-0123 x 103

or nsheahan@ccalliance.org for more information.

Colon Cancer Alliance 2012 Annual Report 33


how you Can help

Leslie Jones and her family knew they wanted to get

involved in National Colorectal Cancer Awareness Month. So in

March, Leslie rallied her loved ones and started an event in honor

of her mother, Bernice Jones, who passed away from colon cancer

the year before. The group hosted a bowling tournament and silent

auction in honor of Bernice, raising more than

$1,800 for the Colon Cancer Alliance and

spreading awareness to the local community.

They even plan on opening an oncology

center in Inglewood, California in 2013 to

help promote cancer research and prevention.

Leslie huddles with friends and family at the Lucky Strike

Bowling Alley in Torrance, California, where 50 people

came out to support her fundraising event.

34 Colon Cancer Alliance 2012 Annual Report


Make Our Vision a reality

Our vision is for a world free of colon cancer. Thanks to support from people like you, we are able to provide

high-quality programs and services, while saving lives through screening, awareness, access and research.

Donate Directly

Whether you choose to make a

one-time gift in honor or memory

of someone special or decide to become a monthly

pledge partner, your gift will support vital educational

and patient support programs. Make a tax-deductible

donation at www.ccalliance.org or mail your check or

money order to:

Colon Cancer Alliance

1025 Vermont Avenue, NW

Suite 1066

Washington, DC 20005

Create a Blue

Star Tribute

A Blue Star Tribute is an online fundraising webpage

which can be customized with your story and photos.

Friends, family and coworkers can make donations

and leave messages on your online guestbook. Blue

Star Tributes can be created in memory of a loved

one, in honor of an individual fighting colon cancer

or in celebration of a milestone such as a wedding,

anniversary or participation in endurance events. We

will provide all the support you need in raising funds

and awareness through this easy-to-use online tool.

learn more at www.ccalliance.org/bluestartributes.

Workplace Giving

Many employers now

offer an opportunity to give

to a charitable cause through

convenient payroll deduction,

and several will even match their employees’

gifts. Please contact your human resources office

to learn more about giving opportunities in your

workplace.

The CCA is a proud member of Community health Charities of America

(CHC), which offers convenient payroll deduction giving options for

employees of many private firms.

Federal employees can give through the Combined Federal Campaign

(CFC). Our CFC number is: 32697.

Double your Support through

Matching Gifts & Volunteer Grants

Many companies participate in matching gift

and/or volunteer grant programs, but they

may not be well publicized. We’ve partnered

with Double the Donation to help donors

and volunteers maximize their support. Visit

www.doublethedonation.com/cca.php to see

if you or your spouse is eligible to submit for a

matching gift or volunteer grant. You can even

download the required forms for your company

directly from the link.

Help a Patient by Giving

to the Blue Note Fund

Would you like to help a

patient struggling to make ends meet due to the high

cost of cancer treatment? The Blue Note Fund provides

monetary relief to colon cancer patients in need

through a one-time grant. Your gift could help cover a

family’s utility bills or a patient’s travel cost to and from

treatment during this difficult time. For more information,

visit www.bluenotefund.org.

Host a Fundraising Event

in the fight against colon cancer, every dollar counts,

and we would love your help. Consider holding a

fundraising event in your community. For fundraising

ideas and tips, visit www.ccalliance.org/help.

on April 1, 2012, Mike Despriet, emily Suess-Despriet and

Brian Michaels participated in the Santa Cruz half Marathon

and 10K as “Mike’s Team” to raise funds and awareness on

behalf of the Colon Cancer Alliance.

Colon Cancer Alliance 2012 Annual Report 35


Join the

Legacy Society

our Legacy Society can combine your philanthropic

and estate planning goals to create positive change

in the lives of those affected by colon cancer. Visit

www.ccalliance.org/legacy to learn more and to

read about individuals who have already made an

impact through a planned gift.

Become an Advocate

rates of colon cancer have decreased in the

past decade; still, several populations continue to

disproportionately suffer. in 2012, more than 3,700

advocates joined us in fighting for legislation that

guarantees all Americans equal access to affordable

and comprehensive medical coverage, including

more than 1,000 who took action supporting h.r.

4120, the “removing Barriers to Colorectal Cancer

Screening Act of 2012.”

Will you help? Stand up for the common good.

Visit www.ccalliance.org/advocacy to learn about

our latest initiatives and how you can get involved.

Be a Buddy

living with uncertainty is the biggest challenge for

any person faced with a cancer diagnosis. even the

most close-knit families need outside support, and

who better to provide that support than others who

have been there? if you are a colon cancer survivor

or caregiver, consider becoming a Buddy. Please

visit www.ccalliance.org, or call our helpline at

(877) 422-2030 to learn more.

36 Colon Cancer Alliance 2012 Annual Report

Volunteer with our Voices Program

our Voices Volunteer and Chapter Program is a

network of local volunteers located throughout

North America who lead colon cancer-fighting

efforts in their communities. We believe that one

voice can save a life, and by uniting voices

across the country, we can bring hope to every

community.

Get Involved with

the Undy 5000

our 5K series is growing fast, and we need your

help! even if you’re not a runner, we’re always

looking for dedicated individuals with a special

skill or local connections that could help us pull off

an amazing event. Perhaps your workplace might

even be interested in a corporate sponsorship.

Can’t help ahead of time? We can always

use an extra hand on race day! Please visit

www.undy5000.org to register or learn more

ways you can help.

in the early morning hours,

volunteers sign in at a

local Undy 5000 5K and

prepare for a busy and

eventful morning!

Shop for a Cause

With the help of our Cause

Marketing Partners, a portion

of the proceeds from your

purchase will go directly to

our mission.

it’s as easy as shopping at more than 1,000 of your

favorite name-brand retailers through iGive.com or

checking out the promotions from one of our many

partners at www.ccalliance.org/shop.

Share your Story

The personal stories of patients, survivors and

caregivers can offer hope and inspiration to those

affected by colon cancer. To share your story, visit

www.ccalliance.org/stories. We also urge you to

join My CCA Support, the CCA’s online community,

and connect with thousands of people around

the world who are sharing similar circumstances.

Visit www.myccasupport.org for more information.

Questions?

Please contact us at info@ccalliance.org or call

(877) 422-2030.

The Colon Cancer Alliance, inc. is a not-for-profit

501(c)3 corporation.

Federal tax iD #86-0947831


ThE GLOBAL COLON CANCEr ALLIANCE

In February 2012, we were excited to announce a new partnership with our

European counterpart, EuropaColon, to form the Global Colon Cancer Alliance (GCCA).

The GCCA provides an international platform for existing colon cancer organizations and new advocacy

groups. The GCCA unites advocates from all corners of the world in the fight against colon cancer and

effectively increases awareness, effects policy change, educates patients and healthcare providers,

and supports research.

Continuing in 2013, the GCCA will invest in researching colon cancer and screening rates across the

globe as well as surveying the types of screening and awareness methods used by individual countries.

To learn more about the GCCA, please visit www.globalcca.org.

“We are excited to be part of a global organization that

will provide hope. Combining our efforts with the fantastic work done by

EuropaColon will help us ensure that our message of getting tested for colon cancer

is heard globally. Through the GCCA, we now have the ability to make a powerful

impact on this disease.”

– Andrew Spiegel,

Colon Cancer Alliance CEO

C. Soundararaj (middle), managing trustee of SNR and Sons Trust, releases a

book on colon cancer during an event for World Cancer Day. Amutha Arun

(right), permanent trustee of Arunagiri Colorectal Cancer Trust, is given the first

copy of the book.

Colon Cancer Alliance 2012 Annual Report 37


Financials,

Board & Staff

In July of 2011, renowned fashion designer and colon cancer survivor

Carmen Marc Valvo joined the Colon Cancer Alliance’s Board of

Directors. Since then, he’s gone above and beyond to raise

awareness and support for the fight against this disease.

Carmen has been instrumental in the success of many Colon Cancer

Alliance events and programs, notably National Dress in Blue Day and

the Undy 5000 5K Series.

Carmen (right) attends the VIP reception at Reason to Party’s

spring gala, which raised more than $15,000 for our Blue

Note Fund.

38 Colon Cancer Alliance 2012 Annual Report

“My work in fashion is my passion - I love it. But my

true job is my advocacy work for colon cancer.”

- Carmen Marc Valvo


FINANCIAL hIGhLIGhTS

For the Fiscal Year ended June 30, 2012

Revenue and Support

Unrestricted

Temporarily

Restricted Total

Revenue $1,269,784 $1,634,724 $2,904,508

Released from Restrictions 3,534,918 (3,534,918) -

TOTAL REVENUE AND SUPPORT 4,804,702 (1,900,194) 2,904,508

Expenses

Program Services

Awareness 1,446,299 - 1,446,299

Connection Campaign 240,334 - 240,334

Conferences 208,251 - 208,251

Education 513,519 - 513,519

Chapters 44,364 - 44,364

Community Health Grants 37,798 - 37,798

Supporting Services

General & Administrative 59,080 - 59,080

Fundraising 467,165 - 467,165

TOTAL ExPENSES 3,016,810 - 3,016,810

Loss on Charitable Remainder Trust (340,649) - (340,649)

Change in Net Assets 1,447,243 (1,900,194) (452,951)

Net Assets, Beginning of year 1,295,397 5,522,494 6,817,891

Net Assets, End of year $2,742,640 $3,622,300 $6,364,940

Fiscal Year 2012 Functional Expenses

1% Chapters

17%

Education

2% General & Adminstrative

1% Community Health Grants

7%

Conferences

16%

Fundraising

8%

Connection

Campaign

48%

Awareness

in fiscal year 2011, we were named as a partial benficiary of a charitable

remainder trust with an estimated distribution value of $6.2M. At the end of fiscal

year 2012, 90% of our temporarily restricted net assets were trust related. The

outstanding receivable of the trust at June 30, 2012 of $3.3M is temporarily

restricted for time and unavailable for programatic use until we receive the funds.

Due to the nature of the remaining assets in the trust, we are unable to predict

exactly when these funds will be received and therefore not able to rely on the

cash proceeds for funding specific fiscal year 2013 programs and events.

Colon Cancer Alliance 2012 Annual Report 39


BOArD OF DIrECTOrS

Kevin Lewis

CCA Co-Founder and Board Chairperson

Principal and Partner, PwC

Michael Zahaby

Treasurer

Chief Credit Officer and Managing Director

CapitalSpring Finance Company, LLC

John Daly, MD, FACS, FRCS (G), FRCS (I)

Dean Emeritus and Donahoo

Professor of Surgery

MEDICAL AND SCIENTIFIC ADVISOry COMMITTEE

Gordon Cole

Colon Cancer Survivor

Michael Choti, MD

Surgeon

Johns Hopkins University

Kathleen Gamblin, RN, BSN, OCN

Nurse

National Coalition of Oncology Nurse Navigators

Julio Garcia-Aguilar, MD, PhD

Surgeon

City of Hope National Medical Center

Axel Grothey, MD

Medical Oncologist

Mayo Clinic

40 Colon Cancer Alliance 2012 Annual Report

James Fleshman, MD

Chief of Surgery

Baylor University Medical Center

Joseph A. Frick

Vice Chairman and Managing Partner

Diversified Search

Leonard Jacob, MD, PhD, DSc (Hon.)

Chairman of the Board, Antares Pharma

Charlie Kelley

Owner, Donelson Ranch Productions

Grammy-Nominated Producer and Recording Artist

Amy Halverson, MD

Surgeon

Robert H. Lurie Comprehensive Cancer Center

Michael D. Kreines, MD, FACP, FACG

Gastroenterologist

University of Cincinnati

John L. Marshall, MD

Medical Oncologist

Ruesch Center for the Cure of Gastrointestinal Cancer

Lombardi Comprehensive Cancer Center

Beth McFarland

Radiologist

American College of Radiology

Jose Mendoza Silveiras, MD, PhD

Colon Cancer Survivor

Jeffrey A. Meyerhardt, MD, MPH

Public Health

Dana-Farber Cancer Institute

Michael Retsky, PhD

Staff, Harvard School of Public Health

Faculty, University College London

Prof Adj., UANL, Monterrey, Mexico

Jerry L. Tolk

Senior Vice President and Group Head

Edelman

Carmen Marc Valvo

Fashion Designer

Entertainment Industry Foundation (EIF) Ambassador

Edith Mitchell, MD

Clinical Professor of Medicine and

Medical Oncology

Jefferson Medical College of

Thomas Jefferson University

Mark Pochapin, MD

Director of the Division of Gastroenterology

and Shultz-Leeds Professor of Gastroenterology

NYU Medical Center

Laura Porter, MD

Colon Cancer Survivor

Vetta L. Sanders Thompson, PhD

Psychologist

Washington University

David Woo, PhD

Research Consultant


COLON CANCEr ALLIANCE STAFF

Andrew Spiegel

Chief Executive Officer

Jasmine Greenamyer

Chief Operating Officer

Melissa Bjorklund

Operations Coordinator

Nancy Butterfield

Volunteer Engagement and

Exhibit Coordinator

Andrea Clay

National Partnership

and Strategy Director

Crawford Clay

Patient Advocacy Coordinator

Steve Cooper

Database Coordinator

Randy Henniger

Patient Support Advocate

Becky Kerner

Communications Associate

Stephanie Marcos

Operations Associate

Undy 5000 5K Series

Katie Matusik

Senior Communications

Coordinator

Jose Mendoza Silveiras

MD, PhD

Medical Consultant

Maura Molish

Fundraising Intern

Hannah Ornell

Operations & Outreach

Associate

Undy 5000 5K Series

Alison Ornitz

Fundraising Associate

Carol Orr

Patient Support Advocate

Chitra Panjabi

Fundraising Manager

Daniella Peña

Assistant Director

Undy 5000 5K Series

Ervin Pinckney

Operations Associate

Laura Porter, MD

Patient Advocate

Medical Consultant

Donna quinlan

Program Director

Martha Raymond

Patient Support and

Outreach Director

Hannah Redford

Data Entry Coordinator

Lori Ritter

Program Coordinator

Todd Setter

National Director

Undy 5000 5K Series

Nicole Sheahan

Corporate Outreach

and Fundraising Director

Stephanie Student

Community Engagement

Coordinator

Undy 5000 5K Series

First row, L to R: Todd Setter, hannah redford, Melissa Bjorklund, Martha raymond. Second row, L to R: Alison ornitz, Donna Quinlan,

Jasmine Greenamyer, Katie Matusik, Daniella Peña, Stephanie Student, Andrew Spiegel. Third row, L to R: Nancy Butterfield, laura Porter,

Nicole Sheahan, Steve Cooper. Andrea Clay, Carol orr, Crawford Clay.

Not pictured: randy henniger, Becky Kerner, Stephanie Marcos, hannah ornell, Chitra Panjabi, ervin Pinckney, Jose Mendoza Silveiras,

Maura Molish, lori ritter.

Colon Cancer Alliance 2012 Annual Report 41


Colon CAnCeR AllIAnCe

1025 vermont Ave., nW - Suite 1066

Washington, dC 20005

toll-Free Helpline (877) 422-2030 | phone number (202) 628-0123

www.ccalliance.org

Federal tax Id #86-0947831

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