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News to Digest, November 2012

IN THIS ISSUE:

  • Tacombamaria Murphy Shares Her Story
  • Crohn's and Colitis Awareness Week
  • Santa Crohn's is Coming to Cebars!
  • Call to Artists
  • CCFA Holiday Card

Chapter Director’s Note

Lesley professional photo A.jpg 

Tomorrow marks the second annual Crohn’s & Colitis Awareness week: December 1-7th, as declared by Senate Resolution 199. I hope you will join us in raising awareness in the Northeast Ohio community and with elected officials!

Awareness week falls at a time when many of us find ourselves reflecting on the year, giving thanks for all the things we have, thinking about where we are in our lives, and spending time with family & friends. I hope you will take a moment to reflect on the blessing of health and to consider how you can make a difference in the lives of the 1.4 million Americans who are currently diagnosed with Crohn’s or colitis. Do you have a few minutes, hours, or even a day to volunteer your time and talents? Email me to get involved with local Awareness Week activities: LHoover@ccfa.org.  

To mark Awareness Week, our local chapter is coordinating street team(s), power calling, media outreach previewing our "Escape the Stall" campaign, and more December 3-7th. We need your help to raise awareness! In honor of Awareness Week, I would like to share a request from Tacombamaria Murphy, which many of our supporters received by mail earlier this month. Whether you are reading this for the first or perhaps the second, I hope you find it inspiring and are moved to make a personal contribution.


I can’t think of a better way to raise awareness than to share Tacomba’s story in her own words:

Tacoma

My name is Tocomba Murphy and I want to tell you my story. I am a mother of 3 and was diagnosed with Crohn’s disease in 2004. Crohn's has become part of my life without my consent; a boundary that sometimes causes me to pause, yet one that I will never allow to stop me.

The symptoms I’ve felt over the years have been painful, isolating, and at times scary. I remember what it was like to hide my symptoms and my diagnosis – for fear of what people might say or think.

It was a long, winding road that got me to where I am today - over the last four years I have undergone two surgeries for temporary ileostomies. And this April, two days prior to my 38th birthday, I underwent surgery again. I had a total proctocolectomy with permanent ileostomy– a procedure for cases like mine where medical therapy has failed or life-threatening complications arise. This surgery removed my colon, anus, and rectum. I am feeling better every day
and have no regrets! 

Over the years, medicines and surgeries have put the disease in remission and helped me heal. But medicine alone did not get me to this point today – the Crohn’s & Colitis Foundation has been a never-ending source of support!

After my surgeries, I was unable to sit for more than 5 minutes at a time. I spent time slowly pacing my floors and laying on the couch or in the bed. I’ve had an awful lot of time to think! Knowing that I was not alone has made all the difference – that there were people in my community leading support groups, providing information to newly diagnosed patients at educational seminars, and raising awareness and funds to find a cure, has truly been a blessing. 

Without CCFA, I wouldn’t be where I am today. CCFA has been a tremendous source of support, positivity, and information for me. I have made friends, participated in Take Steps walks, and in 2011 I was elected to the Board of Directors. This organization has made great strides toward improving the quality of life for patients like me. CCFA is the largest nonprofit funder of Crohn’s and colitis research, which has put us closer to cures more than ever before. But there’s still work to be done.

TODAY is my first day back at work after months of recovery, and I’m starting off slow – just part-time. The only thing I ask for now are the prayers of those who have faith. Ok, that’s not all. I’m asking you to join me in making a donation to fund vital research and other CCFA programs to end Crohn’s disease and ulcerative colitis.  Every gift is meaningful.  Give what you can - $50, $100, $250, whatever you can afford. Thank you! 

Sincerely, 

Tocombamaria K. Murphy

Crohn’s Disease Survivor 
CCFA Board Member
Shaker Heights, OH

Please call Lesley Hoover at 216.524.7700 ext. 1 to make a gift by credit card or send your donation by mail to CCFA Northeast Ohio. Year-End Appeal. 4700 Rockside Road, Suite 425. Independence, OH 44236 

What else can you do?

YOU can make a difference in just a few minutes. Take action in honor of Awareness Week!

If you have 5 minutes... Contact your legislator now and ask them to join the Crohn’s & Colitis Caucus. Our national website makes it easy to find out if your legislator is a member. Go to http://capwiz.com/ccfa/home

If you have 10 minutes... Call a friend or family member who is diagnosed with Crohn’s or colitis. Ask how they are feeling and find out how you can support them. If you are a patient, share your story with friends, family, and colleagues - help increase awareness.

If you have couple hours… Sign up for Take Steps, our annual campaign & community celebration with casual a 2-mile stroll to raise awareness and funds to find a cure. Help raise funds to support cutting-edge research and join us for these 2013 events: Take Steps Cleveland on June 23 at Wade Oval and Take Steps Akron, date coming soon, at Lock 3 Park. Corporate and family team opportunities. Get started now, contact Caitlin: crandall@ccfa.org or 216.524.7700 ext. 3.  

If you have even more energy… Sign up for Team Challenge, our half-marathon training program that will train you to walk/run across the finish line at the destination of your choosing – Chicago, Virginia Wine Country, Napa, or Las Vegas! Raise funds for research to find cures while meeting people and getting into great shape! Get started now, contact Lindsey: lboyd@ccfa.org or 216.524.7700 ext. 4.  

I hope you will keep CCFA in mind as you make your year-end charitable contributions.  Every gift is meaningful, bringing us one step closer to a world without digestive diseases for our children and grandchildren.                             

Lesley Hoover

Lesley Hoover, Chapter Director

 

Looking for Some Holiday Fun? 

Cebars

Santa Crohn's is coming to Cebars!  Thomas M. Cvelbar and  Maureen Hayes Schill are hosting the Cebars Euclid Tavern annual celebration benefitting CCFA.   Please Join us in the Celebration! 

Sunday, December 9th 3:00 – 8:00 p.m.
595 East 185th St. Euclid, OH

       fabulous buffet + live music + raffles     

Come early to watch the Brown’s game and stay for the festivities!
$5 door donation for access to food, bar & live music.

Raffle tickets sold separately.  Questions?  Contact Maureen or Tom…
Maureen: (216)-406-0993 maureenschill@gmail.com, or Tom: (216)-481- 9509 
 

FREE Webcast for Patients, Families & Caregivers

CCFA will be hosting a FREE teleconference/webcast titled It’s Up to You: Decisions & IBD Management. It will take place on Thursday, December 6 from 2:30-3:45 pm EST and will be presented by David Schwartz, MD of Vanderbilt. The program will cover the risks and benefits of treatments for IBD, including complementary and alternative therapies. Dr. Schwartz will also discuss effective communication with your healthcare provider and tips for finding reliable sources of information.


Register Now!

www.ccfa.org/resources/ibd-decisions.html  

  

Akron/Canton Support Group Launched!

Support Group 

We are pleased to announce that the Akron/Canton support group is now up and running!  The group, led by Shelly and Margaret meets on the third Thursday of each month, 7:00 p.m. at the Shaw JCC of Akron: 750 White Pond Drive. If you have questions or would like additional information, please email Shelly at shellyccfa@zoominternet.net or call the Chapter office at 216.524.7700. We hope you will consider joining us!  For information about our other support groups click here.

Interested in support groups, but not able to participate? Check out the newly launched Online Support Group program! With over 8,700 visitors per month, the Online Community continues to be a valuable resource for patients and families. If you are unable to attend in-person support groups, this may be a great resource for you! http://www.ccfacommunity.org/ChatSeries.aspx

The Online Support Group will provide patients with a platform to connect with their peers and support one another over four weekly support group sessions covering key topics in IBD. Prior to each live session, participants will review educational material related to that week’s topic, including disease education, medical management, diet and nutrition, and everyday living. The participants will then meet via a live moderated online chat session to share their experiences and support one another.

 

Camp Oasis Save the Date

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Camp Oasis is a co-ed residential camp for kids with Crohn’s disease and ulcerative colitis. Our 2013 session will be held at Camp Copneconic in Fenton MI from Sunday, July 7, 2013 through Saturday, July 13, 2013.  Applications will be available in mid-January 2013 for campers (entering grades 2 – 11 in fall 2013), Leaders in Training (entering grade 12 in fall 2013), and volunteers (high school graduates, age 19 and up at time of application).

Click here to learn more about this exciting program, or contact Terri Donovan at tlowedonovan@ccfa.org or call 216-524-7700 ext. 2.

 

Team Challenge - Las Vegas Rock'n'Roll Half Marathon

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Team Challenge will be finishing off the year in style as Team Northeast Ohio takes off for their Las Vegas Rock’n’Roll Half Marathon December 2nd. This season, the team has collectively run over 10,000 miles in preparation for the most important 13.1 miles of their training. Each season, participants from around Northeast Ohio come together to receive individualized endurance training as well as personal fundraising support as they reach their goals for the year. Collectively, the team has raised $55,000 and they are far from finished! Fundraising will continue throughout the month of December as they celebrate the success of the weekend and pull in those crucial dollars to support the necessary research to find a cure for Crohn’s disease and ulcerative colitis. You can join us in our pursuit of the cure by donating directly to the team! As they pound the pavement this weekend to bring us 13.1 miles closer to the cure, they promise to wear their orange jerseys with pride as they cross the finish line on the Vegas strip.
 

Take Steps Cleveland 2013

Take Steps logo

We invite you to join us and be a part of something really GREAT – Take Steps Cleveland 2013 Registration is officially open!

This year, Take Steps Cleveland will take place at 3:00pm on Sunday, June 23rdt at Wade Oval, University Circle. Hundreds of people will gather for the event, which includes a 2-mile walk (accessible to all fitness levels and ages), free food, music, education, a kid’s zone, prizes and so much more.

This annual walk brings together patients, families, doctors and supporters in a fun, family-friendly event to build awareness of these diseases and raise money for research and patient support. Last year in Cleveland, over $107,000 was raised, and many of you helped us get there!

Register Now-To be a part of finding a cure.

Register now

www.cctakesteps.org/cleveland

We hope you will join us in this fight against digestive disease!

If you have questions, please call Caitlin Randall Take Steps Walk Manager, 216.524.7700 x3 or 646.276.1002. For more Take Steps information please visit: www.cctakesteps.org/cleveland!

 

Art Opening - Save the Date!

Bear painting

Fighters' an Art Exhibit
Opening Reception: Friday, March 1st, 2013                                                        

Local artist Chrystal Robinson is hosting “Fighters”, an exhibition about chronic illness to raise awareness of Crohn’s and colitis. These debilitating digestive diseases affect 20,000 Northeast Ohioans.

Admission: $5 at the door. Proceeds benefit CCFA Northeast Ohio.
Art auction < live music < snacks < inspirational speakers

Artists of all ages + skill levels encouraged to submit work.
Artwork on all subjects accepted, those related to journeys with chronic illness prioritized. Contact Chrystal with submissions and questions: mystikchrystal@hotmail.com or visit www.ccfa.org/chapters/neohio

Jupiter Studios
346 E Main St
Alliance, OH, 44601

 

Website for College Students

college kids

CCFA has a brand new website with resources for colledge students with IBD to learn more visit:

 www.ccfa.org/campus-connection

 

Holiday Cards Available

holiday cards 2012

CCFA holiday cards now available for purchase

 

New Features at IBdetermined.org!

IBD banner

Check out the new features at www.ibdetermined.org, including the NEW newly diagnosed section; additional content in the Info Center; and a redesigned layout!  You’ll also see the landing page for GI Buddy, which describes its features and will be the jumping off point for the online portal when it’s launched in a few weeks!

 
The I’ll Be Determined website is designed to help patients take a closer look at how they are living with IBD.  Users can navigate through decision journeys that provides pertinent IBD information in various educational and interactive formats and THE WALL, where users can make declarations on how they plan to take charge of their IBD and provide progress updates.

Be our Fan!  Follow Us!

illinois facebook

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 or join the CCFA Northeast Ohio Group on LinkedIn.

 

Thank you to our Lead Chapter partner: 

Cleveland Clinic DDI Logo sized small

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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