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
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.
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.
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.
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
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
CoMMUNiTY heAlTh PArTNerShiP GrANT ProGrAM ................16
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
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
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.
New Colon Cancer
4 Colon Cancer Alliance 2012 Annual Report
2012 MAJOR ACCOMPLISHMENTS
Given in Financial
Undy 5000 5K
in 17 Cities
All 50 States
A Letter from Our CEO
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
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.
Chief Executive Officer, Colon Cancer Alliance
Colon Cancer Alliance 2012 Annual Report 5
Colon cancer is
death in the U.S.
6 Colon Cancer Alliance 2012 Annual Report
Colon Cancer At-A-Glance*
your risk is about
1 in 20, although
this varies widely
90% of new
cases occur in
50 or older.
People with a
(parent, sibling or
offspring) who has
colon cancer have
two to three times
the risk of
There are currently
more than one
million colon cancer
in the U.S.
*Source: American Cancer Society
”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
8 Colon Cancer Alliance 2012 Annual Report
NATIONAL COLOrECTAL CANCEr
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
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.
Colon Cancer Alliance 2012 Annual Report 9
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!
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 wanted reassurance
of survival. And
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
“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
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
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
“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
– Sandra Roberts, Attendee and Survivor
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 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
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
visits per day
14 Colon Cancer Alliance 2012 Annual Report
COLON CANCEr ALLIANCE ONLINE
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.
2009 2010 2011 2012
2010 2011 2012
*Note: All statistics are inclusive across Colon Cancer Alliance platforms.
• Increase access to colon cancer screening and treatment
• Educate survivors about issues that impact them
• Make colon cancer funding and research a Congressional priority
The Removing Barriers to Colorectal Screening Act (H.R. 4120)
• 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
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
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
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
JUNE 28 ACA upheld by the Supreme Court
JULY 11 CCA joins the Coalition for Accessible
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
NOVEMBER 16 CCA joins the ASP Coalition
Colon Cancer Alliance 2012 Annual Report 15
Served in 2012
partners to date
16 Colon Cancer Alliance 2012 Annual Report
COMMuNITy hEALTh pArTNErShIp
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
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
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
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
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
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
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
Participants dress up in Batman costumes at the 2012
San Diego Undy 5000.
Tess Fraser –
Team Poop Strong – Phoenix
Julie Pope & Kathy Bowman – Blue Mooners – Piedmont Triad
Blue Ribbon Booties – San Diego
Brian Mansfield –
Mansfield United –
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
Blue Note Fund Founder
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.
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
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.
Colon Cancer Alliance 2012 Annual Report 21
22 Colon Cancer Alliance 2012 Annual Report
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:
11. Heart of Biddeford 5K: $4,170
Rose Milardo Old Saybrook
Middle School Walk-a-thron
Blue Ribbon Snow Tour
Colon Cancer Alliance 2012 Annual Report 23
• 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
• 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
• Senator Mark Grisanti attends the Buffalo Undy 5000 5K
• 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
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:
• Congressman Frank Palone attends the
Jersey Shore Undy 5000 5K
• 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
• 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
• 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
“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
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
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
Colon Cancer Foundation:
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
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
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
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
• 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
Colon Cancer Alliance 2012 Annual Report 29
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
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.
To join or learn more, simply visit
2008 2009 2010 2011 2012
the My CCA Support online Community is sponsored by Bristol-Myers Squibb, Salix pharmaceuticals and Amgen.
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
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
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
1. CTC is actively being used for colon cancer screening across military
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
Colonoscopy Perceptions Survey Project Conducted with
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
Closing the Gap in Colon Cancer Screening Conducted
with Quest Diagnostics
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
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
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:
You can support colon cancer research through the CCA.
Please contact Nicole Sheahan at (202) 628-0123 x 103
or email@example.com 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.
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
Washington, DC 20005
Create a Blue
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.
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
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,
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
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
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
Shop for a Cause
With the help of our Cause
Marketing Partners, a portion
of the proceeds from your
purchase will go directly to
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.
Please contact us at firstname.lastname@example.org or call
The Colon Cancer Alliance, inc. is a not-for-profit
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
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
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
For the Fiscal Year ended June 30, 2012
Revenue and Support
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
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
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
2% General & Adminstrative
1% Community Health Grants
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
CCA Co-Founder and Board Chairperson
Principal and Partner, PwC
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
Colon Cancer Survivor
Michael Choti, MD
Johns Hopkins University
Kathleen Gamblin, RN, BSN, OCN
National Coalition of Oncology Nurse Navigators
Julio Garcia-Aguilar, MD, PhD
City of Hope National Medical Center
Axel Grothey, MD
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
Leonard Jacob, MD, PhD, DSc (Hon.)
Chairman of the Board, Antares Pharma
Owner, Donelson Ranch Productions
Grammy-Nominated Producer and Recording Artist
Amy Halverson, MD
Robert H. Lurie Comprehensive Cancer Center
Michael D. Kreines, MD, FACP, FACG
University of Cincinnati
John L. Marshall, MD
Ruesch Center for the Cure of Gastrointestinal Cancer
Lombardi Comprehensive Cancer Center
American College of Radiology
Jose Mendoza Silveiras, MD, PhD
Colon Cancer Survivor
Jeffrey A. Meyerhardt, MD, MPH
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
Carmen Marc Valvo
Entertainment Industry Foundation (EIF) Ambassador
Edith Mitchell, MD
Clinical Professor of Medicine and
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
David Woo, PhD
COLON CANCEr ALLIANCE STAFF
Chief Executive Officer
Chief Operating Officer
Volunteer Engagement and
and Strategy Director
Patient Advocacy Coordinator
Patient Support Advocate
Undy 5000 5K Series
Jose Mendoza Silveiras
Operations & Outreach
Undy 5000 5K Series
Patient Support Advocate
Undy 5000 5K Series
Laura Porter, MD
Patient Support and
Data Entry Coordinator
Undy 5000 5K Series
and Fundraising Director
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
Federal tax Id #86-0947831