At Fight Colorectal Cancer, we head straight to “the top” when it comes to demanding a cure for this dreaded disease. Our advocates hit Capitol Hill each March to meet with members of Congress. And throughout the year, a special committee ensures that actions for CRC advocacy are taken.

Meet the newest members of the Grassroots Action Committee of Fight CRC – the team behind the magic that happens year after year at our annual advocacy event, Call-on Congress.

What is the GAC?

The Grassroots Action Committee was formed to coalesce the passions of die-hard colorectal cancer advocates. We consider the GAC our “super committee!” They are committed, engaged advocates who take action when asked and provide advice for engaging and empowering the grassroots advocates.

·         Participating in meetings to communicate priorities and provide input on federal and state legislation

·         Contributing to the development of the advocacy and outreach programs

·         Mentoring advocates at Call-on Congress

·         Guiding the agenda for Call-on Congress

 

Meet Belle, Michell and Patti!

This year, the GAC is adding three wonderful women to the squad.

Belle

Belle Piazza is a stage III rectal cancer survivor diagnosed in October 2007 (27 of 38 lymph nodes were positive.) Belle just happens to be Miss February 2012 of The Colondar. She underwent surgery, chemotherapy and radiation. In 2011, she had a recurrence in her lungs and lymph nodes and is now on “chemo for life.” As a patient who fights for answers, Belle met up with Fight Colorectal Cancer for the first time in 2012. After her late friend, Pat Steer’s, encouragement to attend Call-on Congress, she traveled to Washington DC from the Portland area with her family. She enjoyed Call-on Congress and jumped at the opportunity to get involved on the planning level. As an organizer and planner, Belle looks forward to serving as a resource for anyone who is new to Fight Colorectal Cancer and showing others how to get involved in the fight – either in DC and/or at home.

Michell

Michelle, left, with her two sisters.

Michell Baker is a 5-year veteran of the Call-on Congress. She and her two sisters looked for a way to get involved after their dad, Steve, passed away from colorectal cancer in 2008 at age 56. Struck that colorectal cancer is a preventable disease, the Baker sisters, from Oregon, have met with their representatives every March since 2009 and pushed for funding, research and colorectal cancer policy. This year, Michell is excited to get involved even more through the GAC. As the Executive Director of the Steve Baker Colorectal Cancer Alliance, she is excited to help plan the 2014 Call-on Congress and lead more advocates to become part of Fight CRC’s One Million Strong through local and national participation.

Patti

Patti lost her husband Harry to stage IV colorectal cancer just two days after Christmas in 2006. Starting in 2008, she attended the Call-on Congress and has made it her personal mission to carry on her husband’s memory and give meaning to his life and battle with colorectal cancer. She first got involved with Fight Colorectal Cancer after receiving helpful information and support from the ACOR List Serve and has since formed many close bonds within the group. A trained nurse from Pennsylvania, she changed her focus from critical care to oncology nursing in 2010 and now spends her time helping patients as an Oncology Nurse Navigator. Her mission is to spread awareness about CRC screening and support research whenever and wherever possible. In her own words, she “will not rest until CRC is as extinct as polio.”

The 2013-2014 GAC

Belle, Michell and Patti join a great group of committee members who’ve been leading the charge when it comes to colorectal cancer advocacy. The other GAC members include:

·         Rose and Eric Hausmann (committee chairs)

·         Josh Wimberly

·         Pam Seijo

·         Tom Fueller

·         Jennifer Bretsch

Are YOU interested in joining GAC?

Each GAC member is selected through a nomination process and serves a one-year term (that may be renewed or extended.) If you’d like to know more about how to Fight with Us, please contact us!

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.

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.

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.