National Capital Area Take Steps for Crohn's & Colitis

Event Details

Location: Washington Monument Grounds

Date: 6/21/14
Check-in and Festival Start: 4:30 PM
Walk Start: 5:30 PM

Questions?

Walk Coordinator:
Vickie Thornley
vthornley@ccfa.org

Phone: 312-802-2307

Platinum Sponsor:


Goal = $300,000.00


Achieved = $77,476.30


Make an Event Donation

Team Honor Roll
Top Participants

National Capital Area Take Steps for Crohn's & Colitis

Washington, Take Steps to Find Cures

Register to Walk!Thank you to our Presenting Sponsor:

New Capital Digestive Care

DC, Maryland, Virginia ---Take Steps to Find Cures

Our Take Steps walks offer a wonderful day for family, friends and the community to celebrate all of the efforts that have been put forth in raising funds towards our mission.  Our walk events are filled with live music, food, kids’ entertainment, educational materials, and, of course, wonderful exposure for our corporate partners.

Take Steps for Crohn’s & colitis is a family friendly community walk dedicated to raising awareness and mission-critical funds for cures for digestive diseases.  In the past five years alone, we succeeded in bringing together over 100,000 people and raised close to $40 million to help further CCFA’s mission. 

80 cents of every dollar raised goes towards breakthrough research, public and professional education, and patient support services in communities across the nation.

Register today. Join thousands of others in the fight against digestive diseases.

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The Greater Washington DC/Virginia Chapter of the Crohn's & Colitis Foundation of America 
invites you to our 
FREE Kick Off Party at Comet Ping Pong
. Get ready to be INSPIRED, MOTIVATED
and have some FUN!


April 6, 2014
2:00 to 4:00 pm

Comet Ping Pong
5037 Connecticut Avenue NW
Washington, DC 20008

Space is limited, so please click below to sign up today!
RSVP Now

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Meet Our HONORED HEROS!

SUSAN SPENCE AND JULIE MARCUS

Honored Hero - Sue

 

 

 

 

 

 

 

 

Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow. “  

Mary Anne Radmacher

Unstoppable Sue - My story By: Susan Spence

 I was diagnosed December 2012, and while Crohn’s might sometimes knock me down, I keep getting up. We need to raise awareness. I don’t want anyone to go through what I’ve been through. I was misdiagnosed and misdiagnosed and misdiagnosed.  I’ve been anemic and have had recurring stomach aches for as long as I can remember.  In the summer of 2012 my stomach aches got much, much worse. I lost weight, I had chills, and I had a fever that came and went.  Saying I felt fatigued was an understatement.   In August, I went to the doctor’s – they said stress. In October, I went back – they said acid reflux.

In November, I went back – they said menstrual cycle. There was blood in my stool – they said menstrual cycle. In December they said acid reflux (again). In December, after missing 2 ½ weeks of school, we came home from seeing a gastroenterologist and my fever came back.  My mom said we were going to the hospital.  I didn’t want to.  I just wanted to rest – I was so tired, and it hurt so much.

The person that saved my life was the ultrasound technician – she found something.   She ran out of the room to get the radiologist.  A CAT scan was ordered.  An ambulance came to take me to Children’s National Medical Center. I was taken off all food for a week– I was so sick, I didn’t care.  I was too sick for any procedures.  Fluid was leaking from my intestines into my body cavity – they were worried I was going to go septic.  My iron levels were too low – I had to have blood transfusions.   The nurses said there weren’t enough hours in the day for me to get all the medications I was supposed to be getting. I asked the doctor if I would be able to go back to school.  I went to an all-girl boarding school – and I wanted to get back.  I had papers due, tests to take.  I was on the basketball team – I had games to play.  Would I be able to play softball?  I’m a catcher - I had been training with a pitcher since September, and we had plans – winning game plans.  The doctor said, “Maybe, we’ll see.” After about a week, I was finally healthy enough that the doctor could do an upper and lower endoscopy to figure out exactly what was going on.  As the doctor suspected, I had Crohn’s Disease – and my life has changed ever since.

 In December 2012, I didn’t know what Crohn’s Disease was – but I was sure that it wasn’t going to stop me.  “Mom,” I said, “I’ve got to get back to school – I’ve got to catch Biz (my pitcher).” I went back to school after winter break.  I worked out with the basketball team my first day – the school told me to slow down.  My teammates said I ran like a newborn colt.  I had schoolwork to catch up on - the school told me to take my time – I had all my schoolwork caught up within the week.  I was given Remicade infusions.  They weren’t working; they doubled the dose , that worked – for a few weeks.   I now get a double dose of Remicade every 6 weeks. 

 I count my life in weeks.  Week 1 (right after the infusion) is my ‘fun’ week – if I want to eat anything a little unhealthy – this is the time to do it.  (No potato chips, though - too much fat.  Just gluten free pizza or gluten free spaghetti).  Weeks 5-6 are the worst, that’s when I monitor the pain – how severe, how often, and I’m on a mostly liquid diet. My diet has changed - I eat healthier than anyone else I know, teenager or adult!  I eat a gluten free, sugar free, fat free, dairy free (mostly) and organic.  I drink a smoothie for breakfast and soup for dinner.  Lunch is a meal – chicken or salmon with vegetables.   

Our softball season?  In our first game, we toughed out a 5-4 win.   In our 2nd game, I hit my first “yard” home run – ever!  We finished the season 10 and 1, winning the LIS regular season championship. I played in a softball tournament last summer – during week 6 (before my infusions got moved up).   I didn’t want the coach to know how sick I was because I wanted to play.  The only things I could “eat” were baby food and Boost.  Yeah, I played – I don’t remember if we won or not, but I know I played my hardest.

I went to Camp Oasis as a Leader in Training – it was wonderful.  (Yes, I taught some of the girls how to play softball.) I loved being around kids that were dealing with the same issues that I am. There was a real sense of togetherness, community, and fun.

It has been a year I’ll never forget.  All the while, learning I had a strength that I never realized was there.

I’m a high school junior now – looking at colleges and still catching.  The criteria for colleges have changed with my disease – I look at their food choices, proximity to doctors, and hospitals – certainly questions I never considered asking a college about before. But that’s okay, it’s not going to stop me - I want to be a pediatric gastroenterologist and help other children with this disease. 

The moment you give up all thought of retreat or surrender you become an unstoppable force. Tommy Newberry

Honored Hero - Julie

My name is Julie Marcus and I was diagnosed with Crohn’s disease 5 years ago, when I was 16 years old as a junior in high school. I have been blessed to be part of the CCFA community ever since. This will be my 5th DC walk, and I am excited to join the crowds and take steps as a 2014 Honored Hero.

The first few months after being diagnosed were the hardest, as it is with many IBD patients. I missed too much school, could hardly walk because of the constant pain, dropped a lot of weight, and was waiting for my doctor to pick a treatment (other than Prednisone) that worked. Since then, I’ve realized how precious good health is, and I’ve decided that IBD won’t rule over me as it once did. I know how strong I’ve become from the fight against Crohn’s. So I am honored to represent the foundation that gave me the resources and contacts I needed when I was first diagnosed, and along my journey through college. I know the CCFA will be part of my life here on out, and as I come to the end of my undergrad college career and time on the CCFA National Council of College Leaders, it’s wonderful to mark it with such an honor.

I became part of CCFA’s National Council of College Leaders in 2011 where I met nineteen other college students with an IBD connection and the passion to be a voice for the young CCFA community members. I’ve been able to tell my story and work on projects that help bring the comfort I’ve felt through the foundation to other children and teens. I have met incredible people and have really enjoyed making our conferences, projects and programs a part of my life. Thank you, CCFA community for making my life with IBD easier every day, and I hope I can somehow do the same for you.