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News to Digest, March 2013

IN THIS ISSUE:
  • Volunteer Spotlight - James Kelley
  • Partner Spotlight - Cleveland Clinic
  • Take Steps Cleveland Kick-Off - April 21st
  • Nutrition & IBD Webcast - April 10th
  • Final Week to Join Team Challenge!
  • 26th Annual Golf Tournament - Save the Date
 

Chapter Director’s Note

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I’d like to congratulate the top three fundraising teams for Take Steps: THRONE KINGS led by team captain Sarah Sitko, WALKING FOR THE RUNS, led by team captain Sean Novak, and TEAM BRYEN led by Heather HulecThese teams have set the bar high for 2013! I hope you will follow in their footsteps (pun intended).

Sign up (or reactivate) your team today and start fundraising today!! As many people reading this are already aware, Take Steps is our largest fundraising activity – its success makes our year-round programs possible. We need your help! To meet the goal of $156,000, we need 45 more teams to register and fundraise. To everyone who has already signed up and met with Caitlin to create a team fundraising goal and plan of attack, thank you. Everyone else, what are you waiting for? We need your support today pledge your commitment by following these 3 easy steps:

1.        Register (or re-activate) your team at www.cctakesteps.org/cleveland

2.        Make a $25 or $50 personal contribution to your team (online via the site above or by mail to Caitlin at our office)

3.        Prepare to raise funds & awareness: meet with Caitlin Randall, Walk Manager, who will help you create a fundraising plan for you and your team. 

  
I look forward to seeing you all at the walk and official Kick Off Party on Sunday, April 21, 2013. Join us from 2:00- 5:00 p.m. at Parma Freeway Lanes, for bowling, snacks, & great company. RSVP due by April 19th. 

To everyone who has already supported Take Steps Cleveland 2013, thank you!! Together, we’re laying the foundation for a successful year of community programs and cutting-edge research.  

Lesley Hoover

Lesley Hoover, Chapter Director

  

Volunteer Spotlight:  James Kelley

CCFA is proud to introduce the Take Steps Cleveland 2013 Honored Hero! 

HERO (noun), as defined in the dictionary, has special powers or skills that separate them from the ordinary— and it is these special hero powers that are being used to help bring change to the world. In the world of IBD, we witness heroic powers every day in the form of courage, sense of humor, bravery, and hope. These heroic powers will battle digestive diseases one step at a time, beginning with friends and family, moving on to their schools and communities, taking on the city of Cleveland, then the state of Ohio, Speaking on Capital Hill and one day, changing the world of IBD as we know it-Watch out world James Kelley and his brother Sean are well on their way! 

James Kelley

Meet James Kelley- the true definition of heroism! From the outside, he is a regular 7 year old, who is cute, fun loving, a practical jokester, loves football, NASCAR racing, Legos and overall just being a little boy!  James has been suffering from ulcerative colitis since being an infant and finally leading to his diagnoses at the mere age of two.  He has endured more pain in his short life than most will in a lifetime. Since then, the Kelley family has been placed on a roller coaster ride trying to find the proper medications to keep James’ UC under control, which has proven to be incredibly difficult! It isn’t easy giving a two year old oral medication three times a day or weekly injections at home and monthly infusions at the hospital. These strong medications took a toll on this little boy with numerous side effects and complications that made life for him more difficult.  

While medications have helped James attempt to live a normal life, his condition has never gotten better and remission has never happened. Recently the Kelley’s were faced with another difficult decision. James and his family have fought long and hard for 5 years to keep his ulcerative colitis under control, however at this point removing his colon would be the only hope and option he would have to experience life as a healthy person.  Doctors removed James’ entire colon leaving him with an ostomy bag.  Like a champ, he has adjusted extremely well to this new way of life without a single complaint        

James’s older brother Sean also suffers from Ulcerative Colitis and has set a GREAT example for him as he has had his fair share of hardships and long hospital stays while bravely battling his own colitis. James and his brother Sean spoke on Capitol Hill two years ago to spread awareness for IBD. While there is still a long road ahead for the Kelley’s with more surgeries in the near future for James, he never lets that get him down!  As the Kelley’s are known for saying, “This disease may be an obstacle but will never keep us from living life to the fullest.”  This is exactly the reason James Kelley has been chosen to be the Take Steps Cleveland 2013 Honored Hero along with his sense of humor, love for life and unwillingness to let ulcerative colitis get in his way. Please join Honored Hero James Kelley and his brother Sean as they lead the Cleveland 2013 Take Steps walk!

Register today at www.cctakesteps.org/cleveland!

 

Partner Spotlight - Cleveland Clinic

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We are grateful for the continued support of the Cleveland Clinic Digestive Disease Institute (DDI) as our Lead Chapter Partner. Their support takes a variety of forms including financial support, distributing informational materials to patients, collaborating to raise awareness, providing information to our constituents, and sharing the expertise of affiliated physicians (see below). We are fortunate to have many Clinic physicians actively involved both locally and nationally, in particular:

·         Dr. JP Achkar, Board Member & CMAC Chair (Chapter Medical Advisory Committee)

·         Dr. Barb Kaplan, Board Member &CMAC Member (Chapter Medical Advisory Committee)

These doctors lead local patient educational programs, provide advice on issues that are important to their patients, direct patients to take advantage of CCFA’s services, and act as local liaisons.

We are proud to have funded research projects taking place at the Clinic and look forward to our next opportunity to do so. Thank you to the Cleveland Clinic for joining with us in the battle against IBD.

 

Take Steps Cleveland

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YOU ARE INVITED to the 2013 Take Steps Cleveland Kick-Off as we STRIKE OUT Crohn's & Colitis! Please join us as we Kick-Off the Cleveland Takes Steps 2013 season with an afternoon of unlimited bowling, activities, tasty treats and a chance to meet your fellow Take Steps Cleveland friends!

RSVP Here

What: Official Kickoff Party for Take Steps Cleveland! Free shoe rental, unlimited bowling as well as chicken tenders, fries, pizza, pop and coffee!

When: Sunday, April 21st 2013

Time: 2-5pm

Location: Parma Freeway lanes
12859 Brookpark Road
Cleveland, OH 44130

RSVP To: Caitlin Randall, by April 19th: Call 216.524.7700 ext. 3 or RSVP online 

 

Nutrition & IBD Webcast

Nutrition & IBD

Food for Thought: Nutrition & IBD will take place on Wednesday, April 10 from 1:00-2:15 PM ET. Registration is now open.

This webcast will be presented by Millie Long, MD, MPH of the University of North Carolina at Chapel Hill School of Medicine and Cleveland’s own, Lisa Cimperman, MS, RD, LD of University Hospitals Case Medical Center.  This interactive program will provide up-to-date information on the complex relationship between nutrition and IBD management, and empower patients and families to make healthy food choices throughout the year.


Register Now!www.ccfa.org/resources/nutrition-webcast

 

Do You Need Someone to Talk to About Crohn's or Colitis? 

power of 2
 

Power of Two is a Crohn’s & Colitis Foundation of America support program that connects people facing challenges brought on by Crohn's disease and ulcerative colitis. Individuals seeking help are matched with a peer mentor who has experienced similar medical and personal concerns. Power of Two peer mentors are trained to support participants through phone, email, or video chat exchanges. 

The program is open to people with Crohn’s or colitis and those with children, family members, or other loved ones with these diseases. Anyone over the age of 10 can apply to be a mentor to provide insights into living with Crohn’s and colitis. (Individuals under the age of 18 will need parental/guardian consent.)

Whether you are seeking support or are willing to help others as a peer mentor, please contact Terri Donovan 216-524-7700, ext.2 or tlowedonovan@ccfa.org to learn more about Power of Two!

  

Team Challenge

 

TC March

 

26th Annual Golf Tournament - Save the Date             

Golf

Monday, August 19th at Chagrin Valley Country Club.  Stay tuned for more details and online registration.

 

Be our Fan!  Follow Us!

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Help spread awareness while staying updated on what's happening at CCFA with social media sites.  Become a Facebook fan by selecting a link below and clicking "Like!"

You can also follow us on Twitter  and Pinterest, or join the CCFA Northeast Ohio Group on LinkedIn.

 

Cleveland Clinic DDI Logo sized small

Lead Chapter Partner

 

 

Need help?

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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.


Our mission

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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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