How 4 Young Survivors Changed the Call-on Congress

Posted by Danielle Ripley-Burgess on April 10th, 2013

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

liz-dennis-mom-scholarship-fund

 

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

2013-call-on-congress-scholarship-winners

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A stage IV survivor from Bronx, NY, Vanessa wanted to come to Call-on Congress to “abolish the outdated and incorrect idea that colon cancer is an older man’s disease.”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.

 

Tuesday Recap | 2013 Call-on Congress

Posted by Danielle Ripley-Burgess on March 20th, 2013

fight-crc-advocate-trainingI’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

2013-call-on-congress-speakersDr. 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

group-of-survivors-colon-cancerAndrea 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

fight-crc-folders-statesSurvivors 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

training-advocates-fight-crcThanks 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

fight-colorectal-cancer-cupcakesA 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.

 

Monday Recap | 2013 Call-on Congress

Posted by Danielle Ripley-Burgess on March 18th, 2013

discussion-group-breakout-fight-colorectal-cancerA 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

max-goldstein-research-america-call-on-congress-presentationWe 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.

advocates-colorectal-cancer-fight-crc-call-on-congressMax 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.

rodrick-samuels-colorectal-cancer-advocateMax 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

mike-mcconnell-colorectal-cancer-survivorA 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.