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Announcing .... News to Digest

October 2011 eNewsletter 

Chapter Director’s Note 

 

Lesley professional photo A.jpg

Thank you all for submitting creative and thoughtful ideas for our Chapter E-Newsletter.   I’m pleased to announce Jan Hendricks as the winner of the 'Name our Newsletter' contest.  Kudos for coming up with this great name which our staff unanimously selected!

It is our hope that having a regular name for our Northeast Ohio chapter newsletter, to be included in the subject line will help distinguish it among the countless other emails you receive. 

This month, much of the news we have to share is about community partnerships and events – as we gear up for several new fundraisers.  I hope you will support us in these new ventures – which will raise much-needed funds for mission critical programs: educational seminars, support groups, Camp Oasis, and funding cutting-edge local research.  Visit http://www.biddingforgood.com/ccfagreatlakes to see items available for bidding soon on in our inaugural Online Auction.  Purchase your tickets now and help spread the word about our Movie Gala: http://online.ccfa.org/moviegala2011.  For more details about these and other exciting chapter events, continue reading this newsletter. 

We hope you’ll share our enthusiasm about these new events and the opportunities they present to raise awareness of digestive diseases, expand CCFA’s network in the community and bring in additional support for our year-round programs.  The Fall and Winter will truly be eventful, pun intended!    

Best,

Lesley Hoover

Lesley Hoover, Chapter Director 

Online Auction Goes Live Tomorrow

 

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Visit http://www.biddingforgood.com/ccfagreatlakes to get a sneak peek at the items and register today!   

Hot items include:

  • 6 Months of Fresh Vegetables Shipped Directly to Your Home, Courtesy of The Chef’s Garden
  • Private Home Dog Training: Evaluation Session and 4 Training Sessions, Courtesy of Columbia Dog Training
  • 6 weeks of Children’s Learn to Skate Lessons, Courtesy of The City of Shaker Heights
  • Admission for 6 to African Safari Wildlife Park in Port Clinton
  • Pampered Chef 6-Piece Professional Cookware, Courtesy of Susan Warshay
  • Got Guts silicone bracelets

Don’t miss out on these and other wonderful items, visit our site today and register to receive regular updates on the auction and for the opportunity to watch and bid on items.

 

 

Chapter Partner Spotlight: Cleveland Clinic Digestive Disease Institute

CCDDI

The Cleveland Clinic Digestive Disease Institute proudly serves as Chapter Partner for the Northeast Ohio Chapter of the Crohn’s and Colitis Foundation of America.

Our two organizations have a rich history of working together to one day beat Crohn’s disease and ulcerative colitis.

“While medical and surgical advances in recent years have dramatically improved life for those who suffer from Crohn’s disease and ulcerative colitis, there is much work that remains to be done,” says Cleveland Clinic gastroenterologist Jean-Paul Achkar, MD, who serves as Medical Advisory Committee Chair and sits on the Board of Trustees for the CCFA’s Northeast Ohio Chapter.

Past collaborations range from supporting the annual Take Steps Walk and the Northeast Ohio Research Initiative to community education events to creating fun-spirited fundraisers – such as our recent mustache-shaving contest. Our physicians also have played active leadership roles in the CCFA and continue to advance the field with research, surgical innovations and advanced treatment options.

To learn more about Cleveland Clinic’s Digestive Disease Institute, visit clevelandclinic.org/digestive 

 

November Youngstown Education Program 

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The Northeast Ohio Chapter of the Crohn’s & Colitis Foundation of America
invites you to join us for Understanding Inflammatory Bowel Diseases:
What Every Patient Needs to Know

Date:                    November 7, 2011

Time:                   Registration begins at 6:30 p.m. with the program at 7:00 p.m.

Place:                 Politis Auditorium at Northside Medical Center

                             Medical Education Building, Ground Level

                             500 Gypsy Lane

                             Youngstown OH 44512

Speaker:               Dr. Rony C. Awaida, Gastroenterologist Avamar Gastroenterology and Endoscopy

Register:              Free event, snacks provided.

Visit www.ccfa.org/chapters/neohio or call 216.524.7700




CCFA Movie Gala 

Movie Gala Invitation FRONT 2

On December 8, 2011 the Northeast Ohio Chapter of the Crohn’s and Colitis Foundation will be hosting a Movie Gala to bring supporters together in an upscale environment for a fun evening of gourmet food stations, wine and beer panel discussion on filmmaking in Ohio, and the choice of a movie being shown at the Capitol Theatre in the Gordon Square Arts District.  Built in 1921, the Capitol Theater has detailed wall murals, classically-inspired architecture, and a vaudeville stage that has been restored to recreate the atmosphere of a 1920s-era movie palace, but with all the amenities of 21st century technology.  Catering will be provided by Luxe Kitchen & Lounge. 

The evening will feature a panel discussion with Chagrin Falls native and Producer Tyler Davidson and Clint O’Connor, film critic for the Cleveland Plain Dealer.  Davidson is the Producer of recent smash hit 'Take Shelter' which was shot in Lorain County, Ohio.  The movie has opened at Cannes, Sundance, Los Angeles and New York to great reviews.  It opened last Friday here in Cleveland at the Cedar Lee to a packed house.  Clint O’Connor is the Film Critic for the Cleveland Plain Dealer and has covered the movie industry since 1999, when he joined the Plain Dealer’s Arts and Entertainment staff.  He became chief film critic in 2005.  We look forward to presenting guests with the opportunity to hear directly from these industry professionals and to mingle with them during the cocktail hour.  The event will also include a Balloon-Pop Raffle with several big ticket items.

We are grateful for the support from these generous event sponsors:

 UH Digestive Institute

CCDDI

To purchase tickets for the Movie Gala visit:

online.ccfa.org/moviegala2011

or call (216)524-7700

Regular Admission $60

(includes 2 drink tickets, gourmet food stations and a film)

VIP Admission $100

(includes open bar, gourmet food stations, and a film with VIP reserved seating)




Take Steps Akron  

 

Andy's Army.jpgThank you to everyone who made Take Steps Akron such a huge success.  Raising more than $47,000 we blew our original goal of $30,000 out of the water and more than TRIPLED what we raised last year.  2011 set the precedent for all future Take Step walks in Akron and it couldn’t have been done without the tremendous support of all our volunteers, walkers, team captains and donors.

We want to extend a special thank you to our Take Steps Akron committee who dedicated their time and effort into making this event such a success.  Thank you to Antonella Slone, Brian Lamoda, Bob and Norma Westfall, Amanda Steckel, Joanne Lee and Rachel Elkins.  We are grateful for your leadership.

Also, thank you to our generous sponsors: Cleveland Clinic Digestive Disease Institute, Digestive Health Center, Abbott Pharmaceuticals, Abbott Nutrition, Harwick Standard Distribution, Bruner Cox and Tramonte Distributing.

Event photos are in!  A special thanks to Rachel Elkins who did a spectacular job capturing all of the fun at the walk. You can download the pictures from the website for free. T o protect everyone’s privacy, we have password protected the pictures.  Only recipients of this email will be able to log in.  The password is "crohns".

 

Registration for Take Steps Cleveland 2012 NOW OPEN

Sign Up Now image.jpgFor a change of pace, we will be hosting the walk on a Sunday evening this year.  Join us Sunday, June 3rd at Wade Oval for our fifth annual Take Steps Cleveland and help us raise $166,000 to support community programs.  Start today by reactivating/registering your team and making a personal contribution of $25 today.

 

 




Call for Volunteers

 

CCFA is looking for a few good volunteers to….

  1. Provide office support with assembling patient packets, delivering materials to G.I. offices, and administrative support.  Please email Terri: tlowedonovan@ccfa.org if you are interested.
  2. Join the Movie Gala Committee for our new event to be held December 8 at the Capitol Theatre.  Please email Terri: tlowedonovan@ccfa.org to learn more or join the committee.



Update:  CCFA Testimony Pays Off!

 

The U.S. Food and Drug Administration approved Remicade (infliximab) to treat moderately to severely active ulcerative colitis (UC) in children older than 6 years who have had inadequate response to conventional therapy. As you’ll recall Dr. Sandra Kim, University of North Carolina School of Medicine and Co-chair of CCFA’s Pediatric Affairs Committee, and Nick Uzl, patient and alumni of the CCFA’s National Youth Leadership Council, testified at an FDA Advisory Committee meeting about the FDA approval of Remicade for use on pediatric Ulcerative Colitis patients. 

Dr. Kim emphasized the importance of facilitating additional treatment options for pediatric UC patients, while also discussing the risks and benefits of this treatment.



CCFA Co-sponsors the IBD Briefing with the Crohn's & Colitis Caucus

 

On October 12th, CCFA in collaboration with the AGA and NASPHGAN will host an IBD Briefing on Capitol Hill.  Legislators, staffers and patients will gather to learn about the latest in IBD research. 

 Speakers include:

  • Congressman Crenshaw (R-FL) and Jackson Jr (D-IL), Co-chairs, Crohn's and Colitis Caucus
  • Dr. Steve James, Director, Division of Digestive Diseases and Nutrition, National Institute of Diabetes and Digestive and Kidney Diseases
  • Dr. Sandra Kim, University of North Carolina School of Medicine
  • Dr. Bruce Sands, Chief, The Henry Janowitz Division of Gastroenterology and the Dr. Burrill B. Crohn Professor of Medicine
  • Dr. Oliva-Hemker, Chief of Pediatric Gastroenterology and Nutrition, Johns Hopkins University School of Medicine

More to come after the event!



CCFA Co-sponsors the IBD Briefing with Crohn's & Colitis Caucus

On October 12th, CCFA in collaboration with the AGA and NASPHGAN will host an IBD Briefing on Capitol Hill.  Legislators, staffers and patients will gather to learn about the latest in IBD research. 

Speakers include:

  • Congressman Crenshaw (R-FL) and Jackson Jr (D-IL), Co-chairs, Crohn's and Colitis Caucus
  • Dr. Steve James, Director, Division of Digestive Diseases and Nutrition, National Institute of Diabetes and Digestive and Kidney Diseases
  • Dr. Sandra Kim, University of North Carolina School of Medicine
  • Dr. Bruce Sands, Chief, The Henry Janowitz Division of Gastroenterology and the Dr. Burrill B. Crohn Professor of Medicine
  • Dr. Oliva-Hemker, Chief of Pediatric Gastroenterology and Nutrition, Johns Hopkins University School of Medicine

More to come after the event!




IBD Program and the CDC - Funding Restored in the Senate Appropriations Bill!

Thanks to advocates speaking out around the country, the HHS Appropriations Subcommittee has FULLY RESTORED funding for the CDC IBD program in their FY12 funding bill. The Committee report shows that the CDC IBD Program was fully restored to $680,000.  In addition, the committee recommendations on IBD that we worked to advance were included in the legislation.  We will keep you posted as it is reviewed by the House and eventually by the President.   

 
Continue to take action! Encourage your Representative to join the Crohn’s and Colitis Congressional Caucus to make a larger presence on Capitol Hill! 

If you do not receive our Action Alerts, please sign up for the Advocacy Network and invite others! 




Note from Team Challenge Mentor Katie Tricarichi 

Katie Tric

“You might be surprised I’m fundraising for Team Challenge and not Take Steps but I decided to train for my first half marathon to do something just a little more for CCFA. I have amazing support from CCFA staff (thanks Carissa!), our team challenge coaches, and my fellow teammates. I went from running 5 houses without stopping to 8 miles in just 9 short weeks. I haven’t even gone to Vegas yet and already this has been the most rewarding experience I have ever had. Our travel arrangements are booked, we’re signed up for the race and we’re in the final leg of our training. If you haven’t participated Team Challenge yet I cannot recommend enough to hear more about it at our Virginia half-marathon info sessions (coming soon). Stay tuned. See you at the finish line. – Katie Tricarichi, Take Steps Walk Director

To meet the rest of the team click here.



Testimony from CCFA's Day on the Hill

“I'm Josh Shapiro, and I'm an actor.  I'm 21 years old, I am a junior at Muhlenberg College studying theater and music.  I'm a pretty good student.  I have friends, I have enemies, a laptop, a cell phone, and a disease. 

I put disease last.  Sorry.  There's a certain stigma associated with the word.  People blink, back up, ask questions.  They’re usually polite.  I don't like to bring it up.  But whenever I have to explain my fifth bathroom trip in as many minutes, and whenever I have to explain that no, I don't drink, it cuts into my professional and social life.  Put those two together, and it cuts into my life.  Yeah, it cuts into my life.  I didn't want to say it, but I believe that ignorance is stupidity rather than bliss. 

Oh, I try to minimize it as best as I can.  The disease isn't readily visible, and at a glance no one would know I have it.  I would like to try to keep it that way.  But it rears its head eventually.  I need more sleep than other people my age.  I go to the bathroom more often.  I need to watch what I eat and how I eat it.  The amount of pills I take are so ridiculous that I have breakfast as a side dish.  Yes, I joke.  Humor as a coping mechanism.  I'm a funny guy.  If I wasn't, I wouldn't know what to do with myself.

If I had a wheelchair, or a broken leg, no questions or explanations would be necessary.  No uncomfortable talks with professors, no awkward conversations with my peers -- they see it, they know it, and it becomes a non-issue.  But the disease isn't something you can see.  It creeps up on me and others.  I've been fortunate enough so far that most of my peers and professors are the accepting type.  But every so often there comes a person -- a professor who shakes his head whenever I leave for the restroom, a fellow actor who talks behind my back whenever I get winded after two minutes of dance -- who defines me by my limitations.  "Josh, that kid who goes to the bathroom a lot".

It affects most of my day.  Let me take you through my day.  I will not exaggerate.

I'll wake up, hopefully on time.  I'll shower, but bits of my hair keep falling out as a side-effect to one of my pills.  I'll eat breakfast (maybe, because the more I eat, the more time I'll spend in the bathroom). 

I'll go to my classes and look more tired than everyone else in the room, even though I got more sleep than everyone else in the room.  I'll go to lunch and I'll get up to use the bathroom five minutes after I've sat down.

Then, if I'm in a show, I'll have rehearsal.  The best and worst time of the day.  I live for my shows.  I put my all into every step and every line and every note.  So it stings me when the director comes up to me and asks me why I'm half-assing a number.  I'll remind him that the disease saps my energy to a great degree.  He'll murmur an "okay" and will promptly forget the exchange the next day.  I'll head back to my room to do work, then go to sleep at 11:00, while the rest of my peers study, read, relax, socialize until 1:00 in the morning.  A day in the life of me.  Rinse, repeat. 

There are better days, of course.  And there are worse days.  The worst part of the disease is its unpredictability.  I will be full of energy on Monday and horribly tired on Tuesday.  Or maybe the other way around.  There is no way to know and thus no way to prepare. 

I take medication for the disease.  It works, and then it doesn't.  It's not a matter of "will it work?" so much as "how long will it work before my body rejects what is trying to help?"  And sometimes it doesn't work at all.

Would you believe that there are people worse off?  People with their intestines replaced with bags that they have to wear outside on their stomachs.  People who have no future outside of their house.  I'm not like them now, but I might end up like them.  Frankly, it scares me.  Who wants to wear his shit under his shirt?

I mean to provoke.  I mean to push action.  This is a problem that affects me and others every day.  The disease is not visible but it is no less devastating to the body and the mind.  On behalf of everyone living with Crohn’s disease, I am asking for your help.”

 

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“One easy way is to “like” us at http://www.facebook.com/tcnortheastohio and suggest your friends “like” us as well!”

 

Chapter Partners 

 

CCDDI

 www.clevelandclinic.org

 UH Digestive Institute

www.uhhospitals.org 

 

 



 

 

 

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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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