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.

Carlea Bauman, President of Fight Colorectal Cancer

I am deeply disappointed that President Obama’s fiscal year (FY) 2014 budget would strip nearly $4 million from the Centers for Disease Control and Prevention’s (CDC) Colorectal Cancer Control Program. The CDC estimates that the loss of funding will mean at least five fewer programs (out of the current 29) working to prevent colorectal cancer.

The president’s budget assumes that less federal funding is needed for direct screenings, such as colorectal, breast, and cervical screenings, because most health plans are required to cover these screenings without co-pays or deductibles, and because, starting in 2014, the Affordable Care Act ensures that no one can be denied health insurance because of a pre-existing condition.

However, a number of barriers contribute to low colorectal cancer screening rates, such as lack of awareness and misinformation about screening – not just lack of health coverage. A well-funded colorectal cancer control program is needed to support important awareness and education initiatives across the country.

The hopeful news is that Congress does not have to accept the President’s budget. I urge colorectal cancer patients, survivors, caregivers, and physicians to let their members of Congress know that a cut to the colorectal cancer control programs at the CDC is unacceptable.

On a positive note, the President’s budget would increase research funding to the National Institutes of Health (NIH) by $471 million (a 1.5 percent increase) over FY 2012 amounts. The NIH estimates this will result in 351 more research project grants in FY 2014.

I recognize that the President and Congress are budgeting in a difficult economic environment, but our country needs dynamic thinking from our policymakers when it comes to budget decisions. Preventing colorectal cancer and targeted treatment reduce downstream costs to our health care system and to our federal government. That makes good budget sense to me.

This year’s Call-on Congress introduced something new:  a scholarship fund.

One survivor honoring her mother opened the door for 3 fellow colorectal cancer survivors to join our advocacy efforts.

And what a great door they opened. Here are their stories and how they set a precedent for future Call-on Congress events.

Giving through Grief

We had the opportunity of meeting Joyce Anne Ware Longfellow, mother of colorectal cancer survivor Liz Dennis, at the 2012 Call-on Congress. Liz attended many previous Call-on Congress events and brought her mother last year. Both walked away determined to bring more people in 2013.

Unfortunately, Joyce passed away in September 2012.

As Liz grieved the loss of her beloved mother (and caretaker), she decided to honor her through a special way since it was also her mother’s goal to have more people at the Call-on Congress.

She created a scholarship fund. Her fund enabled 3 grassroots advocates to join us on The Hill for the 2013 Call-on Congress.

Liz specifically wanted the scholarships to go to first-time attendees who’d never experienced the Call-on Congress.

And we have to say – this year’s scholarship opened the doors for 3 fantastic women to join us.

Scholarship Recipients for Call-on Congress

Sheila, Liz, Candace and Vanessa

Three colorectal cancer survivors came to the Call-on Congress with Liz’s scholarships. Three strong women carried their jaw-dropping stories into congressional offices to advocate for colorectal cancer awareness and medical research funding.

Vanessa

A stage IV survivor from Bronx, NY, Vanessa wanted to come to Call-on Congress to “abolish the outdated and incorrect idea that colon cancer is an older man’s disease.” She explained that her entire life is dedicated to giving back. She’s participated in many activities that involve supporting other survivors but wanted to get involved in advocacy. Fight Colorectal Cancer’s Call-on Congress was the perfect event for her to jump in and a scholarship made that possible.

Candace

Candace, from Chicago, IL, was diagnosed with stage IIB colon cancer in 2003. She told us, “I am attending on behalf of myself, other survivors and those to be diagnosed after me. I hope to accomplish raising an increased awareness about the need to make colon cancer awareness and screenings a priority.” Candace hopes to help make March all about BLUE, just like October is much about PINK. Having the 2013 Call-on Congress fall within Candace’s 10th year of survivorship made the event even more special.

Sheila

A IIIC colon cancer survivor from Ohio, Sheila came to Call-on Congress to “tell my story that it is not only an old man’s disease as I was 38 at time of diagnosis.” Not knowing much about the event, she saw the opportunity for a scholarship on Facebook and signed up. She and her husband traveled to DC to advocate on The Hill and share their powerful story. Wheels started turning during the Call-on Congress and they’re looking into how more family members can come next year to continue the advocacy efforts.

Scholarships Open Doors – Will You Help?

The scholarships allowed 3 amazing survivors to participate in our Call-on Congress. Each used their opportunity to share about colorectal cancer and make a difference on The Hill.

They were a voice for those who could not join us. And their voices were heard.

The scholarship fund created by Liz changed the Call-on Congress this year. It introduced a program that allowed advocates to attend; advocates who needed a scholarship to come.

And we’re looking to do the same for next year.

Liz has offered to match dollar-for-dollar any funds donated toward 2014 Call-on Congress scholarships.

If you’d like to support the Call-on Congress scholarship fund, please follow this link to donate.

Let’s get behind a cure together.

OOOOh there’s something about a good ole’ fashioned Washington, DC rally that really gets us going.

Next Monday you will find Fight Colorectal Cancer standing alongside many other health-focused non-profits at the Rally for Medical Research.

Why?

Well, we do have a thing for The Hill.

But we’re participating to show our government that we too have a dream – a county that invests in a cure for colorectal cancer and supports medical research.

If you’re in or around the DC area Monday, April 8, join us at the Rally for Medical Research.

If you’re not around – keep reading for how you can get involved! You don’t have to live near DC to make a difference.

After all, that’s why we have US representatives from every state.

What’s This Rally All About?

Many sponsors and partner organizations are coming together to make the rally a reality. Because another reality is that federal funding for medical research is on the chopping block.

As this continues, the future health of Americans is in jeopardy.

As we learned from our researchers at the Call-on Congress, medical research is critical if we want to find a cure for disease, stay healthy and lengthen lives. But when federal funds do not support the National Institutes of Health (NIH) and other federal agencies, we shoot ourselves in the foot.

Or, should we say, we let ourselves go. Or we let disease take control… you get the idea.

Understanding the NIH

We don’t plan to stand outside with signs and bat our eyes at lawmakers for fun.

We have a specific ask:  We want to see more federal funds go to the NIH. As the Rally website explains it,

The federal government plays an essential role in funding medical research in the United States, primarily through the National Institutes of Health (NIH). The NIH is part of the Department of Health and Human Services and is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems. Currently funded at $30.6 billion, the NIH is the world’s leading supporter of medical research; research that has had an immeasurable impact on all of our lives by enhancing public health, lengthening life, reducing the burden of illness and disability and most importantly, saving lives.   We must continue the vigorous pursuit of new breakthroughs in science, health and medicine that are supported through the NIH to improve the entire spectrum of patient care, from prevention, early detection, and diagnosis, to treatment and long-term survivorship.  Moreover, NIH funding does more than save lives.  It fuels the U.S. economy and creates jobs in our communities.

We must fight to keep the NIH funded and protected if we want to stay on top of the world’s groundbreaking medical research.

Especially when it comes to colorectal cancer.

Are you Coming to The Rally?

If you’re coming out for the DC rally, here’s the info you’ll need: Medical Research Rally Information Page

Can’t Make It? No problem.

If you cannot attend the rally (we get it – we work, too) – here’s how you can help:

• Email your reps
• Tweet at your reps
• Write a Letter to the Editor this week

Check out the Rally for Medical Research’s Toolkit for sample tweets and messages – you don’t even have to come up with this stuff on your own!

We hope you can join us once again to demand a cure for colorectal cancer and fight for medical research funding.

Let’s show the world we are strong – and we think it should stay that way.

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.