Last week, National Siblings Day took the Facebook feeds by storm! And in the spirit of celebrating sibling love, I wanted you to meet two sisters who came to the 2013 Call-on Congress. They are precious women who used the advocacy event to honor and remember their mom.

Here is their story.

Sisters Michelle (left) and Casey (right).

Maybe I came too soon…

You might remember the woman I referenced in the Monday recap from the Call-on Congress. As I floated around the room I met one woman whose tears prevented her from sharing her story.

A day or so later, I sat down with her and her sister to learn about what brought them to the Call-on Congress.

Michelle and Casey lost their mother to colorectal cancer in February. They noticed information about the 2013 Call-on Congress and thought advocacy would be a good way to make a difference and prevent others from suffering.

Initially, as first-timers to the event, they wondered if they’d come to advocate too soon…. just a little over a month after their mother’s passing.

But as they learned about the impact research and funding can have on fighting disease, their loss fueled them to share their stories on The Hill and carry their mother’s strength into congressional offices.

Mom was so strong…

The family at a GYRIG race last year, Mom wore the “S”, Dad wore the “T” and each sibling wore the other letters.

The girls showed tremendous strength as they told Congressmen and other advocates about their mom.

Strength they attribute directly to her.

As the winners of our Week #1 March Facebook photo contest, they shared a photo depicting the importance of being STRONG in their family.

At a Get Your Rear in Gear event in Fort Myers, Florida the family created Team STRONG.

The girls’ mom and dad, as well as each sibling, wore one letter making up the word “Strong.” Their mom wore the “S”, Dad wore the “R” and then the rest of the siblings wore the other letters. (With a cousin filling in for their brother.)

“We aren’t strong without one another,” Casey explained. “It takes all of us to have strength.”

Each family member was assigned a letter to carry with them as their mom faced the disease.

At the Call-on Congress, the sisters each pulled out necklaces with their letter, explaining that they wear them everyday, keeping their mom’s strength with them everywhere they go.

Carrying on mom’s legacy

As a survivor, I often feel a heavy burden to “give back” and “do something” since I am fortunate to still be here. But not until I met these women did I realize that family members who’ve lost a loved one carry these burdens, too.

I am so thankful that these daughters (and actually, moms themselves) found the Call-on Congress and decided to come, although their grief is still fresh and they have young kids at home. I’m thankful that families touched by colorectal cancer have a way to DO something about it – and demand a change.

That’s precisely what these sisters did at the Call-on Congress.  And that’s exactly what our team will continue to do.

Those who go into medical research often have science on the mind.

Not politics.

But researchers who joined us for the 2013 Call-on Congress showed how the two fields merge. Particularly when funding is involved.

Fighting Colorectal Cancer at the Research and Policy Levels

I love how Nancy Roach, Founder and Chair of the Board, explains the importance of advocacy AND research in the One Million Strong PSA,

“I founded Fight Colorectal Cancer in 2006 because people who have been touched by colorectal cancer need a voice at the tables where decisions are being made that impact their survival.” – Nancy Roach

Fighting colorectal cancer demands more than raising awareness of disease. We must also push for funding that enables researchers to get closer to a cure and understand survivorship.

Talking Research

A fantastic panel of distinguished researchers joined us at the 2013 Call-on Congress:

• Dan Dixon, PhD, Associate Professor, University of Kansas
• Andi Dwyer, Project Director for the Colorado Cancer
• Johanna Bendell, MD, Director of Gastrointestinal Cancer Research and associate director of Drug Development at the Sarah Cannon Research Institute

Great speakers also enlightened us on the impact of research:

• Max G. Bronstein, MPP, Research!America
• Camille Bonta, Fight Colorectal Cancer Policy Expert

These professionals trained our advocates about many issues related to advancements in medical research and the federal budget’s impact:

Federal budget cuts mean cuts in medical research

Max Bronstein from Research!America walked us through budget cuts, sequestration and debt ceilings. He showed us how funding cuts impact the National Institute of Health (NIH) and Centers for Disease Control and Prevention (CDC) – two big agencies that fuel much of our country’s medical research.

Furthermore, policy expert Camille explained that the cost of doing business (and research) in the U.S. has gone up over the years… but federal budgets have not kept up.

Check out the slides from Max’s presentation: Funding Research in a Time of Fiscal Chaos

Young researchers may be leaving

The United States leads the world in medical research for now; however, Max explained that other countries are gaining on us, if not surpassing us, when it comes to federally-funded medical research.

“Young researchers may be leaving the field. All of us are waiting for new treatments. If we cannot fund research, we may miss out on those opportunities.” – Max Bronstein, Research!America

Read more – Research!America’s Facts About Cancer 2013

Cuts in Research Dollars Hit Home

Andi Dwyer walked us through the specifics of what happens when a research program is cut. She showed us that a center may be shut down, research assistant position eliminated, a program halted, a waiting list lengthened and trials discontinued.

Max also explained the challenging plight of researchers at the NIH who attempt to run massive research programs without a known budget.

Review Andi’s presentation slides: Cancer Survivorship Research

New, EXCITING findings in Colorectal Cancer Research

Although medical research faces challenges, Dr. Bendell shared the hope and advancements in research. She passionately explained how clinical trials increase understanding of colorectal cancer – especially when it comes to biomarkers and tumor classifications.

Understanding the exact type of tumor leads to life-saving treatments designed to combat specific disease states.

Read Dr. Bendell’s slides from her presentation: Promising Agents for CRC Treatment

Researchers Hit the Hill

Dan Dixon, PhD, and Senator Roberts from KS

Researchers joining us did not only offer training. Dan, pictured above, met with our RATS team.

Several of them joined us on The Hill. They experienced the power of telling their stories and explaining the importance of research funding with representatives first-hand.

Because the researchers themselves took time to advocate for colorectal cancer on Congress, it got their attention!

See, research and advocacy DO go together.

And Fight Colorectal Cancer makes that happen.

I’ve never served in the military but I can only imagine what soldiers go through the night before they leave for deployment or battle.

Years of training and preparation lead up to the big day. It’s the military-version of starring on Broadway. It must feel similar to tonight – the hours before we hit the Hill during the Call-on Congress.

The fight against colorectal cancer feels like war sometimes. Battle after battle (or doctor’s visits, scans, surgeries and procedures) create a war on many fronts… whether you’re the patient in the hospital bed or the loved one holding their hand.

But after a day like today’s Call-on Congress, those of us in the fight feel like soldiers.

We’re prepped and ready to take action when it comes to legislation. We understand after today that Capitol Hill needs to get involved if we are going to win this war.

And tomorrow, it’s time to show them why.

Recognizing the research at stake

Yesterday we heard an overview of the importance of research. We received encouragement to channel our passion into advocacy. (Read the Monday recap.)

Today, we got into the nitty-gritty.

Clinical trials offer hope

Dr. Johanna Bendell (Director of Gastrointestinal Oncology Research at the Sarah Cannon Research Institute) delivered a presentation that:

• Explained the advancements in clinical trials and potential treatments on the horizon.
• Emphasized the importance of clinical trials.
• Offered explanations to big concepts in the colorectal cancer world in terms of biomarkers, pathway signaling, inhibitors, gene expressions and more.

Ultimately, she offered passionate insight into colorectal cancer research and treatment options. She injected hope that life-saving therapies sit on the horizon as research continues to receive funding and evolve.

Check out all of the slides to Dr. Bendell’s presentation

Survivorship studies involve millions

Andrea Dwyer (Project Director for the Colorado Cancer Prevention and Control Research Network) followed Dr. Bendell with insights into survivorship research. She showed the crowd:

• A population created by 1 million colorectal cancer survivors and the near 13 million cancer survivors.
• Efforts of researchers studying the transition from active treatment to survivorship.
• Benefits of a cancer registry.
• The impact of budget cuts on survivor research.

Andi encouraged a crowd of survivors and families that resources from survivorship studies will become available with ongoing survivor research.

Check out Andi’s presentation slides.

An Afternoon of Advocacy

Survivors swimming in the details after a morning of powerful presentations knew the clear message of our efforts:  We NEED research in order to find a cure for colorectal cancer. We NEED federal funding.

Fired up with facts (and a good dose of hope), we learned how to best deliver this information to Congress for the remainder of the afternoon.

Advocates sat through discussions, presentations and break-out sessions that discussed topics like:

• The Research Process
• The Legislative Process
• Importance of Engaging in Networks
• In-depth review of 2013 Legislative Priorities
• How to Prepare for the Hill
• How to tell our Stories and Prepare for Pushback
• How Congress Really Works

Thanks again to all of the speakers who participated:

• Nancy Roach (Chair & Founder of Fight Colorectal Cancer)
• Andi Dwyer (Project Director for the Colorado Cancer Prevention and Control Research Network)
• Dan Dixon, PhD (Associate Professor at the University of Kansas Cancer Center)
• Mary Doroshenk (Director of National Colorectal Cancer Roundtable)
• Camille Bonta (Fight Colorectal Cancer Policy Expert)
• Carlea Bauman (President of Fight Colorectal Cancer)
• Anjee Davis (VP of Programs for Fight Colorectal Cancer)
• Michael Sola (VP of Operations for Fight Colorectal Cancer)
• Devin James (CEO of Devin James Group)
• Christoper Kush (President of Soapbox Consulting)
• Martin B. Gold, MPA, JD

We’re Ready for the Hill

A packed agenda of research and policy meetings made for a long day.

But we did get cupcakes in the middle of the afternoon. How sweet.

Tonight, we soak in the policies. Rehearse our stories. Recite the “asks.” Take deep breaths.

Because tomorrow… it’s showtime.

We’re ready to ask for change when it comes to fighting colorectal cancer and federal funds.

We’re here to demand a cure.

Connect With Fight Colorectal Cancer

Want to see more from Day Two – 2013 Call-on Congress?

Read our Twitter and check out Facebook.

Look for hashtag #ConC2013 or tags from @FightCRC

Share your story on the One Million Strong blog and take the One Million Strong pledge.

A small group of advocates from Virgina sat in a circle. Tasked with telling their stories, each took turns explaining what led them to the 2013 Call-on Congress.

A girlfriend of a survivor who passed away several years ago kicked off with her story.

Then two colorectal cancer survivors chimed in.

A Fight Colorectal Cancer staff member explained what led her to taking a job at the organization.

And then, the circle got quiet.

As a young woman sitting next to me tried to speak, her eyes welled up and tears streamed down her face. Although she never managed to tell her story, we all knew she came in memory of someone dearly loved.

Someone who fought colorectal cancer. Someone who’s story is about to be told on Capitol Hill this week.

“If you are not taking up time with your members of Congress, nobody would be. Nobody up on Capitol Hill would be talking about colorectal cancer.” – Carlea Bauman, President of Fight Colorectal Cancer

Research Saves Lives and Money

We kicked off the 2013 Call-on Congress with a brief overview of the federal budget.

Way to start in lightly, huh?

But our presenter, Max Bronstein, MPP, from Research!America did a fabulous job of simplifying the complex system and process we face.

Max explained the federal budget, federal spending and the importance of allocating funds to medical research. Some of his main points and highlights included:

• The public is EXTREMELY supportive of medical research.
• The National Institute of Health (NIH) receives less than 1% of the federal budget.
• Current-day sequestration is cutting programs invested in cancer research.
• The budget crisis is creating a very challenging environment for researchers who run massive research programs without knowing their budgets.
• We should urge Congress to compromise and make a long-standing deal.

Check out the slides from Max Bronstein’s presentation.

Max ended with great encouragement to our team of colorectal cancer advocates:

• Advocacy is patriotic.
• We are ALL patients.
• Research needs you. (Research is in big trouble right now and faces the biggest threat it’s ever seen. If we’re not out there advocating for federal funds to go to research, the problem will get worse.)
• The right advocate at the right time can make a HUGE impact.
• Advocacy determines priorities.

“Congress determines what’s important by hearing from constituents. Advocacy determines priorities.” Max Bronstein, MPP, Research!America

We are Winning.

Max clued us into the reality (and crisis) of research funding and how it relates to colorectal cancer.

Rodrick Samuels – he got us fired up.

As the owner of Profile Barber Institute & CRC advocate, he gave an energetic presentation that included “repeat after me’s,” and audience participation. (Oh – and he happened to throw in a lesson on how to properly describe hair-cutting scissors … I mean shears.)

A passionate man honoring his late mother through his efforts, Rodrick showed the crowd how anyone can channel their passion and position for disease advocacy.

He encouraged everyone to remember:

• We are winning. We are strong.
• What we push for makes dollars and sense.
• We will comb for a cure and cut out colorectal cancer.

“There is nothing in this world I can’t do nothing about – even if it’s adjusting myself in an unpleasant situation so it doesn’t steal my spirit.” – Rodrick Samuels

What an awesome speaker to get us fired up!

Wrapping up Day One

A mix-and-mingle with cocktails and dinner filled the evening. Advocates swapped more stories and found common bonds with one another. An encouragement from Mike McConnell (father-in-law of Lady Antebellum’s Charles Kelley) rounded out the evening.

Goosebumps lined our arms by the time Mike finished his impromptu speech.

Heading into tomorrow…

As many echoed throughout the day, the Call-on Congress is more than a set of meetings and training. It’s an introduction into a new family.

Whether we’re here for ourselves, the survivor in our lives or the loved one whose memory still brings us to tears, one thing is clear after today-

We are strong.

We will make sure Congress knows all about us.

Connect With Fight Colorectal Cancer this Week

Want to see more from Day One – 2013 Call-on Congress?

Read our Twitter and check out Facebook.

Look for hashtag #ConC2013 or tags from @FightCRC

Share your story on the One Million Strong blog and take the One Million Strong pledge.

This FREE one-day event is packed with exciting activities. No need to register, just show up!

If you are in the New York City area and would like to volunteer or participate in one of our FREE yoga classes (space limited) be sure to sign up!

Take the pledge today, share our Facebook cover photo, and participate in our One Million Strong Facebook Photo Competition!

Check out the SCHEDULE of EVENTS for March 1st!

Learn more about ONE MILLION STRONG. TAKE THE PLEDGE TODAY!

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