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News to Digest, February 2012

Chapter Director’s Note

 Lesley professional photo A.jpg

Here at the CCFA Northeast Ohio office, we have the pleasure of getting to know new people every day (in person, by phone, and virtually).  It is truly an honor that so many of you share your personal stories with us. 

From the story of your diagnosis, to the ways that CCFA involvement has provided much-needed support, to feedback on our programs and events, to checking in with updates on how you’re feeling, to those who share their stories more publicly by serving as Mentors for Team Challenge or Local Heroes for Take Steps, and the many of you who have already offered to be ‘on deck’ for our new program: The Power of One, (rolling out later this year to connect patients with each other to speak by phone for support and comfort).  Every story touches our hearts and serves as an ever-present reminder of CCFA’s impact in our community. 

And so, we dedicate this month’s newsletter to you.  Thank you for sharing!  We know that your stories will continue to provide inspiration and build awareness.       

Lesley Hoover

Lesley Hoover, Chapter Director

 

Volunteer Spotlight:  Allie Hirko

 

purple ribbon

Eighteen year-old, Allie Hirko has been involved with CCFA as a volunteer, support group participant, and most recently as a Leader in Training (LIT) at Camp Oasis.  Diagnosed with Crohn's disease at the age of fifteen, Allie has learned to cope with her disease with strength and determination.  Below is an excerpt from a class essay she wrote about her experience, entitled "I Believe."

"I believe in tattoos. I believe in tattoos because they represent significant meaning behind a person’s life. Tattoos tell a story and my tattoo tells a story about my life.

A week before my 18th birthday, I got my first tattoo. Yes, I got my Mom's permission first.  Finally earning her permission, I immediately knew what I wanted. I started selecting the color it was going to be, the style of writing, and where I was going to place it. I immediately went up to the shop to have it drafted and priced. Matt, the tattoo artist explained the standard procedure to my mom. We scheduled for the next day, then left.

I was extremely nervous the rest of the night. I was worried that the tattoo would hurt or that it wouldn’t come out how I expected it. Arriving the next day, I was anxious for the process to start. Matt had taken me back to the area where the tattoo would be done. He told me that he would shave my leg, put some chemicals on to make sure it was sterile, and then apply the stencil. When he put the stencil on, it became real, he was starting my tattoo and there was no going back. After Matt finished, I got my first look. I fell in love. My tattoo was a part of my life and defined what my life consists of.

I was diagnosed with Crohn’s Disease at age 15. This auto-immune disease attacks different parts of my body, but is particularly devastating to my stomach. I had a hard time accepting the fact that I would have to take medications every day and that I couldn’t eat a lot of foods that I loved. Mainly I struggled with the fact that I possibly was going to be viewed differently. My tattoo shows my early struggles.

The image itself is of a purple ribbon, because purple is the color that represents Crohn’s Disease. The quote around the ribbon says “You never know how strong you are, until it’s your only option.” This reminds me every day that there will be obstacles that I will have to overcome and no matter how big or how hard the obstacle is, I will get through it.

People get tattoos for multiple reasons. Some are to show a story, others maybe just to get one. This disease will always be a part of my life. It’s as permanent as the ink that created my artwork. That’s the meaning of my tattoo and that is why I believe in tattoos."

  

Last Chance to Register for Ask the Experts

Our annual Ask the Experts education program will be held this Saturday, March 3rd at the Embassy Suites Hotel in Independence. The program starts at 9:00 AM, with registration starting at 8:30 AM, and features speakers from the Cleveland Clinic and University Hospitals of Cleveland as well as CCFA volunteers and patient advocates. A continental breakfast is included.

The program is FREE and open to anyone interested in learning more about IBD and disease management. Please register HERE or call 216.524.7700. The program is supported, in part, through the generous contributions of Abbott, Janssen, Shire, the Cleveland Clinic, and University Hospitals. You don't want to miss this informative, interactive program! 

 

CCFA Free Webcast

We are pleased to announce our first teleconference/webcast of 2012 titled Transitions in IBD: Graduating to Young Adult Care. It will be held on Thursday, March 15 from 8:00-9:15 PM ET. As many of you know, the transition from pediatric to adult IBD care can be complex and challenging. This program will address the steps that patients, parents/caregivers, and healthcare providers can take to ensure a successful transition. It will be presented by Laurie Fishman, MD of Children's Hospital Boston and Harvard Medical School, and Maureen Kelly, RN, MS, CPNP, of UNC at Chapel Hill. We are also seeking accreditation for nurses. 

There are two convenient ways for participants to join: Teleconference: Dial in to the toll-free number to hear the presentation and participate in an interactive question-and-answer session or Webcast: Log on to your computer to hear the presentation, see the program slides, and submit questions. 

Register Now!  www.ccfa.org/webcasts/transitions or call 877-264-4949, ext. 3

 

2012 Camp Oasis - Now Accepting Applications

Camp Oasis

Camp Oasis is a coed, weeklong overnight camp offered exclusively to kids with IBD. Campers from Northeast Ohio attend the session at Camp Copneconic in Fenton MI, which is about 30 miles north of Ann Arbor. This year Camp Oasis will be held July 8 – 14th.

Camp Oasis accepts children ages 7 through 18 (second grade through high school seniors).  Camp Oasis provides a safe and supportive environment staffed by a highly trained medical team, available onsite at all times. The program is also staffed by professional Camp Copneconic counselors as well as CCFA volunteers – most with IBD themselves – and doctors and nurses who devote a week of their time to campers.

CCFA strongly believes it is important for all children with IBD to have an opportunity to attend Camp Oasis; therefore, we are prioritizing FIRST TIME campers this year. We have limited space available. If you are interested in applying on behalf of a camper or as a counselor, please visit www.ccfa.org/camps. If you have questions, please contact Terri Lowe-Donovan at 216.524.7700.

 

Introducing Annemaire Barnett, Take Steps Walk Manager

Hello!  My name is Annemarie Monica Barnett and I am your new Take Steps Walk Manager.  I know the name is a mouthful, good thing I only go by Annemarie.  I was born and raised in Cincinnati, and this is the first time I have ever lived out of my hometown.  One fun fact about me is I am a Steelers Fan.... But don't hold that against me! 

I am currently living with my cousin Kristi in Aurora while searching for a condo or house.  I am super excited to be in Cleveland but I will however miss my 7 year-old cocker spaniel Pepper Anne who couldn’t make the trip due to Kristi's allergies. 

What most excites me about joining the CCFA team is that I will have the time to focus on the two walks, getting to know all of you, and dedicating my time to building upon the solid foundation laid by my predecessor, Katie.  I want you to know that the mission of CCFA is close to my heart.  I have two friends with Crohn's and have both watched them suffer and  overcome challenges.  They are now managing their diseases thanks to medications and treatments, many of which came out of CCFA funded research findings. 

I cannot wait to meet each of you and continue to build on the successes of Take Steps Cleveland and Akron!  I bring 16 years of non-profit experience, and have managed walks before.  Most recently I was with the Cystic Fibrosis Foundation where I oversaw the Greater Cincinnati walk that welcomed more than 35,00 walkers and raised $360,000.    In addition to the walks I created the Cincinnati's Finest Young Professionals event, the Young Professional Leadership Board and produced the Celebrity Waiters luncheon. 

Again I cannot wait to meet you all.  To all you Team Captains out there, I will be calling you soon to set up get-to-know-you meetings.  I am excited and honored to be with CCFA and working with you.   

Mark your calendars for Take Steps Cleveland, to be held on Sunday, June 3rd at Wade Oval in University Circle.  Registration is now open.  Register now at www.cctakesteps.org/cleveland2012  

 

Visit Wine Country with Team Challenge

TC 1

It's not too late ,come learn more at these last chance info sessions:

  • Saturday, March 3, 2012 directly following Ask the Experts at 12:45pm - Embassy Suites in Independence  
  • Saturday, March 10 at 9:00 am after the St. Malachi Race.  Directly following the race will be a nutrition clinic and information session to learn more about Team Challenge.  For directions and information about the race visit: http://www.hermescleveland.com/roadracing/Malachi/index.php  

To RSVP contact Carissa at 216.524.7700, or cbowlin@ccfa.org.

Meet our 2012 Virginia Wine Country Honored Heroes:  Shayne, Tammy and Becky are our inspiration and our hope!  If they can stay strong, you can too. Sign up for Team Challenge to help find a cure for Crohn's and colitis - for Shayne, Tammy, Becky and all of the other people who suffer from these diseases.

Shayne 

Shayne is a 5th grader who has been battling Crohn's Disease since age 5. He lives in Aurora with his mom, dad, sister and two puppies.  Shayne has been on medication since his diagnosis and has frequent blood tests to monitor the disease. This disease has interfered with his growth and weight. It robs him of appetite and energy. He recently told his teacher, "Some days I'm a rocket-some days I'm a turtle!" When other children are out playing, Shayne is often inside napping or lying on the couch because he has a bellyache or he is too tired.

Shayne tries not to let Crohn's keep him down. He loves his two puppies, video games, and working in the garage with his dad. He also loves music and is learning to play the bassoon.

Shayne’s mother, Jo Ann participated in the 2011 Virginia Wine Country Half-Marathon.

jo tammy rebecca tammy tc 


Tammy (far left) was diagnosed with Crohn's 14 years ago.  She has been married for 12 years to her husband Nick who is very supportive.  She has two awesome kids, Katelyn (7) and Jarred (11) and a boxer puppy named Lucy. 

“Having Crohn's has taught me not to sweat the small stuff in life, you have to treasure the good days because you don't know when the next flare might knock you on your butt.” Says Tammy, “I've become very good at packing for week-long stay in the hospital.  I have an excellent support system that definitely has helped me through the bad times.”

One of these difficult times was in 2010, when Tammy was quarantined in a room because she got a lung infection from her compromised immune system due to the drugs she has to take to keep flares under control.   

“My kids thought the masks were funny and I had to wear them to go outside my hospital room for tests,” remembers Tammy, “I even had to wear them home for a while when I went out to make sure I didn't get or give any germs to others." 

Tammy has found that attitude is very important to stay strong while dealing with Crohn’s.  “Staying positive is very important when you have this disease because if you can't see the humor in things, it just makes things worse.”

Tammy is an alum of the 2011 Virginia Wine Country half-marathon, when she surpassed the gold fundraising level!  She is back now for Virginia 2012 not only as an honored hero, but also as a Mentor to support new participants in reaching their goals.

Becky TC 

Becky (far left) was diagnosed with Crohn’s Disease when she was 15 years old. Over the past 13 years she has undergone many different tests and procedures, including steroids, hospitalization and finally surgery. At her lowest weight of 80 pounds she still tried to stay active. She was determined to get better and stay better!

“I had surgery on August 6, 2010. During my recovery , I made a promise to myself that I would run a half-marathon to prove that Crohn’s does not define me and cannot keep me down!” declares Becky, “Although surgery has given me 18 months of a symptom-free life, it does not mean my Crohn’s won't come back. That is why it is so important to find a cure!”

Becky is an alum of the Virginia 2011 Virginia Wine Country half-marathon season, when she surpassed the gold fundraising level! She also volunteered as a Mentor for the Vegas 2011 season . Becky is back now for the Virginia 2012 season as an honored hero. 

Thank you to all our honorees for sharing their stories!
 

25th Annual Golf Outing - Call for Volunteers

2012 Golf Image

On August 20th we will host our annual golf outing at the beautiful Chagrin Valley Country Club.  This will be the 25th year we have hosted this event.  Contact Lesley Hoover lhoover@ccfa.org or (216)524-7700 if you are interested in being a part of the organizing comittee.  We need your help to make this year's golf outing  the most successful one yet!   

 

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CCFA has moved to a new Facebook page, please 

"Like" us at our new home:http://www.facebook.com/ccfanortheastohio

 

 

Cleveland Clinic DDI Logo sized small

Lead Chapter Partner

 

 

UH Digestive Institute

 

 

 

 

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Contact our Information Resource Center: 888.694.8872 or www.ccfa.org. For tips, sharing, and support from other people with Crohn's disease or ulcerative colitis, join our free CCFA Community site.


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To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.


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