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News to Digest, July 2012

IN THIS ISSUE:

  • NEW 'Ask the Expert' Column
  • 2 Terrific Education Programs
  • Actor Ken Baumann of ‘The Secret Life of the American Teenager’

Chapter Director’s Note

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As most people reading this are already well aware, funding cutting-edge research is a critical part of the Crohn’s & Colitis Foundation’s (CCFA) mission. Since our founding in 1967, CCFA has directed more than $164 million to support research. As the landscape of scientific discovery changes, our approach to finding cures continues to evolve.

Research shows that 20% of individuals with IBD have a close relative who also affected. And, the lifetime risk for developing IBD is 10 to 20 times higher for close family members (siblings or offspring). Clearly genetics play an important role in determining whether someone develops IBD. Identification of the specific genes that affect risk is needed.

What this means is taking a computational biology approach to undertake this massive project – collecting extraordinary amounts of data on patients – to study and identify their genes. Scientists are confident that we can make dramatic advances toward cures by doing this.

It’s similar to the approach the National Institutes of Health has taken with its cancer initiative – bringing together multiple disciplines like molecular biology, genetics, immunology, and computational biology to work as a team.

This groundbreaking project: IBD Genetics Initiative is being led by Principal Investigator Ramnik Xavier, M.D., Ph.D., chairman of the department of gastroenterology at Massachusetts General Hospital (MGH) in Boston. Co – PI, "Skip" Virgin, M.D., Ph.D., of Washington University Medical Center in St. Louis, is chairman of its pathology and immunology department and director of the MRCE, Biodefense Institute at Washington University in St. Louis. Dr. Virgin observes how times have changed in science, 

"Previously, you could be an expert on a particular gene or an organism and make substantial progress in understanding a disease. In complex diseases, like IBD, that model is really not very effective... We need to work in an integrated scientific structure that brings together experts with different expertise rather than a 'one gene, one lab' environment... CCFA is facilitating a transition in its sponsored research."

CCFA has embarked on a historic campaign to raise more than $6 million over the next 5 years – to make this research possible. When you consider the 100 IBD genes that have been identified, 28 which are shared by the diseases, 71 for Crohn's, and 47 for colitis, it is overwhelming to consider how to sort it all out. However, Dr. Xavier is confident that this is manageable. He points out that 50 percent of the discovered genes actually are clustered in areas of interest with shared impact or function. Dr. Xavier comments: 


     "Despite 100 loci or genes, what is emerging is that 100 loci work in about a dozen pathways so
     we may be able to reduce the complexity to a few candidate pathways."

Now that we have the visionary scientists to lead this groundbreaking research, we are seeking the visionary donors who can support it.  Click here to learn more and find out how you can make a difference.

 

Lesley Hoover

Lesley Hoover, Chapter Director

   

Volunteer Spotlight - Ron Teplitzky

 

Ron

For 7+ years, we have been fortunate to have Ron Teplitzky serve on our local Board of Directors.  Ron served as Board President for the past 4 years and is succeeded by Joe Prada. He will continue to be involved on the Board as Nominating Chair and a member of our Golf Committee. Ron resides in Solon with his wife Debbie.  Along with sons Mike and Kevin, they ‘bleed Bobcat Green’!
 
A graduate of Cleveland Heights High, Ron received his B.A., summa cum laude, from Ohio University, where he was a member of Phi Beta Kappa and President of AEPi,.  He received his J.D., magna cum laude, from Case Western Reserve University School of Law in 1987, where he achieved The Order of the Coif distinction. 

Ron is a Principal at Singerman, Mills, Desberg & Kauntz Co., L.P.A., where he practices primarily in the areas of commercial finance and banking, business law, and creditors’ rights.  Prior to joining Singerman, Mills, Desberg & Kauntz, he was a partner in the Cleveland office of Benesch, Friedlander, Coplan & Aronoff, LLP.

Ron’s many philanthropic endeavors include the Ohio University Alumni Board of Trustees, Board of Directors of Ohio University Hillel, and Vice-Chair of the Regional Board of Directors of the Anti-Defamation League.  He is also a member of the Cleveland Metropolitan, Ohio State, and American Bar Associations.  Among other honors, Ron was named an “Ohio Superlawyer” by Cincinnati Magazine in 2004-2006 and 2008-2011, and named in The Best Lawyers in America for 2006-2011.

We are grateful for Ron’s leadership and commitment and are proud to count him as part of the CCFA family! 

 

ASK THE EXPERT - July's Reponse by Jeffry Katz, MD 

Dr. Katz

Q: I’ve seen a lot of media coverage lately about the ‘good’ bacteria in the gut and probiotics.  Can probiotics be beneficial if you have IBD?

A: There exists great enthusiasm for the potential of pre- and probiotic treatment of ulcerative colitis. However, despite positive findings from studies of probiotics performed in laboratory models of IBD, proof of real benefit for prebiotics and probiotics lags far behind both physician and patient enthusiasm for their use.

Inflammatory bowel disease (IBD) is believed to result from an abnormal immune response to normal gut bacteria in a person genetically predisposed to Crohn’s disease or ulcerative colitis. There is a growing appreciation of the complex interaction between the “bugs” that live in our intestines and the influence these bacteria have on our overall well-being.  This understanding has led to a growing interest in manipulating the gut flora for the purpose of improving health and, for example, treating IBD. 

DEFINITIONS:

  • Probiotics are live microorganisms, either bacteria or yeast, which when consumed in adequate amounts confer health benefits to the person eating them.
  • Prebiotics, in contrast, are non-digestible foods, like pectin or certain complex sugars (fructose oligosaccharides) that act as a nutrient source for growth of beneficial bacteria.

The current best evidence for the efficacy of probiotics in IBD comes from studies using the probiotic VSL#3 or E. coli Nissle 1917 to treat mild ulcerative colitis and pouchitis. Very limited information suggests that a few other probiotics, such as Lactobacillus GG (“Culturelle”) or Saccharomyces boulardii (“Florastor”), may also have some effect in mild colitis.  There is also preliminary evidence to support a benefit for combining probiotics and prebiotics to treat mild ulcerative colitis.  To date, there really are no good studies showing a helpful effect of probiotics in Crohn’s disease.  Unfortunately, for almost all other probiotics sold in drugstores and health food stores, for all probiotic fortified yogurts sold in supermarkets, and for commercially available prebiotic-probiotic combinations there are no scientific studies of benefit in IBD.

The failure of clinical probiotic trials in IBD to consistently show benefit should not be viewed as a condemnation of the entire concept of therapeutic manipulation of the intestinal flora, but rather as a humbling reminder of how much we still have to learn about the role gut bacteria play in health and disease.

We are only just beginning to understand the bacteria that live in our guts and how to best use them to promote health through studies of the human “microbiome” that are supported by CCFA research grants.  We still know very little about what single probiotic organism, combination of probiotics, or dose of probiotics might work best.  We are just starting to learn how what we eat affects the growth of bacteria in our intestines.  However, given the evident safety of probiotics and prebiotics, the public interest in such complementary therapy, and both government and private funding resources, now is the time to look beneath the surface and discover which prebiotics and probiotics work in IBD.  The future of probiotics and prebiotics remains bright.

To learn more about this and other nutritional impacts on IBD, attend CCFA’s Nutrition Program on October 9th in Beachwood.  More information coming soon.

Jeffry A. Katz, MD
Associate Professor of Medicine
Case Western Reserve University School of Medicine
Medical Director, Inflammatory Bowel Diseases
Digestive Health Institute
University Hospitals Case Medical Center
 
  
ABOUT ‘ASK THE EXPERT’
This new column will feature information and guidance from a variety of IBD experts in Northeast Ohio including but not limited to gastroenterologists, colorectal surgeons, and dieticians. The frequency of the column will be determined by the amount of inquiries submitted and availability of our experts.  To submit questions, email tlowedonovan@ccfa.org with ‘Ask the Expert’ in the subject line.

 

Take Steps Akron

Take Steps Logo

 

Take Steps Akron is making strides and needs you! If you haven’t registered yet don’t miss out on all the click on the “register now button” to register today!

Register now

If you weren’t able to be a fundraising team for Cleveland or happen to live in the Akron area, please join us on October 6th at Lock 3 Park.  Thank you to all our walkers and Team Captains who have already signed up and started their fundraising efforts! Don’t forget every team that raises at least $1000 is automatically entered in our banner decorating contest

Be a part of finding a cure.  Register today at www.cctakesteps.org/akron

 Mark your calendar

Take Steps Akron Kick Off party, August 25th from 2pm-4pm!  For more information call Caitlin, 216-524-7700 ext. 3 or email crandall@ccfa.org.

 

 

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

 

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We are currently in the process of recruiting for our Winter event, the Las Vegas Rock’n’Roll Half Marathon. This night event will take over the Vegas strip as thousands of people across the country will come together to complete this race. Team Challenge is our 15 week endurance training and fundraising program that builds up to an all-expense paid trip for the December 2, 2012 race. We have several information sessions coming up in the area to give you more information about Team Challenge, the Las Vegas event, and an opportunity to meet the staff that will help you through the entire process from your personal fundraising coach to your two highly qualified endurance coaches.

  • Saturday, August 4th at 8:00 a.m. – Mojo’s Coffee & More, 600 Dover Center Road, Bay Village, OH 44140

  • Tuesday, August 7th at 6:30 p.m. – Pub Bricco, 1841 Merriman Road, Akron, OH 44313

  • Monday, August 13th at 6:30 p.m. – Whole Foods Market, 22749 Chagrin Blvd, Woodmere, OH 44122

  • Wednesday, August 15th at 6:30 p.m. – Red Hawk Grill, 7481 Auburn Road, Concord, OH 44077

  • Tuesday, August 21st at 7:00 a.m. – LA Pete’s, 6080 Brecksville Road, Independence, OH 44131

  • Thursday, August 23rd at 6:00 p.m. – Hard Rock Café, 230 West Huron Road, Cleveland, OH 44113

For more information or to RSVP email Lindsey Boyd, Team Challenge Endurance Manager, at lboyd@ccfa.org or call 216.524.7700 x 4. www.ccteamchallenge.org.

  

Notes on Camp (Oasis)

 

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The 11th annual Camp Oasis in Fenton, Michigan was fantastic! The children enjoyed water activities, high ropes, archery, ‘mock rock’ and of course the talent show, closing ceremonies and campfire.

We cannot thank you enough for sharing your children with us this week. Every camper is incredibly special and has brought a unique perspective to Camp Oasis. We hope the experiences and friendships here will last a lifetime, and we applaud families for your courage and faith in sending kids to camp. 

camp beach 

‘I Thought I'd Be Nervous To Share This But I'm Not Because Camp Is Home’

By Olivia Linn, read at Camp Oasis Talent Show on 7/13/12 (Fenton, Michigan)
Because here we know everyone bleeds sometimes.                                                                        
Because I like myself most when I'm here; am joyous and
loving and less afraid.  Closer to the person
I want to be. Because leaving this and leaving friends who are more like sisters
tears me to pieces
and coming back feels like coming home. 
Because we have to be Crohn's and UC kids
all the time and not one more kid should have to be that.
 
Because I have seen pain I can barely understand splayed
on the faces of my sisters.
Because I have seen them fight with courage.
 
Because sometimes it's so much
easier to give up;
because medicines stop working and our
bodies get tired and it's
so. hard. to go forward; so hard to be grateful,
hard to be loving,
hard to feel stronger,
hard to be vulnerable and
open when our broken places still
twinge.
 
But because my sisters around me are doing the same,
crying with me and singing encouragement,
falling and hurting and rising and loving with
open arms,
going forward; because
here, together, we are strong enough.

  camp talent show

 

25th Annual Golf Tournament - August 20th Chagrin Valley Country Club 

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Honoring Longtime Sponsor Wm. Sopko & Sons and the Sopko family.

Get tickets before the event sells out! Admission options range from for ‘Dinner & Cocktails Only’ tickets to the entire day of activities.  

Schedule of Events:

9:00     Live broadcast by Tony Rizzo & ESPN Cleveland begins
10:00   Registration
11:30   Lunch
1:00     Shotgun Start
6:00     Cocktails & buffet dinner with auctions, awards


Visit  http://online.ccfa.org/golf25 to purchase tickets and for full details, pricing, and information on tax-deductibility of tickets and sponsorships.  This event would not be possible without our dedicated Committee and event sponsors. 

Committee Co-Chairs
Rob Edelstein
Phil Moshier
 
Honorary Chairs
Ken Landis
Dave Ferguson
 
Committee Members: 
Brian Basel
 Howard Edelstein
Dr. Eric Marderstein
Bill Sopko
Ron Teplitzky
Bob Westfall

 

Title Sponsor:

Sopko Logo 

Cleveland Clinic DDI Logo sized small Lead Chapter Sponsor 

Phil Moshier, Sagemark Consulting  

   

Second Annual Movie Gala October 25th: Save the Date

Rollie at Movie Gala 

Mix and mingle at this cocktail event at the historic Capitol Theatre. The evening will include red carpet photos, gourmet food stations & cocktails, raffle, and the film of your choosing at the theatre.  More details coming soon, contact Terri to learn more or join the committee email tlowedonovan@ccfa.org.

    

FREE Educational Programs for Patients, Families & Caregivers

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Treatment Approaches in IBD:  Options to Consider

This is FREE informational presentation and interactive question-and-answer session that will help you sort through treatment options for inflammatory bowel diseases (IBD). Learn more about:  risks and benefits of medication, surgery, and integrative treatments in IBD;  impact of treatment adherence on disease management and quality of life; and talking with your health care team about your treatment plan.

September 4, 2012 at 7:00 pm

 

Featuring:
William Shaheen, MD
Gastroenterologist 

Akron Digestive Disease Consultants, Inc.

 Summa Health System, Akron City Hospital, Professional Center South

Basement Auditorium, 55 Arch St, Basement Level

Akron OH 44304 

Parking is available in the Parking Deck that is attached to the Professional Center South, 55 Arch street.

The entrance is off of Upson Street.

Register Today!

Online: Akron Treatments Program

Email: neohio@ccfa.org

Phone: 216.524.7700

  

Nutrition & IBD: Choices for Adults and Kids - Save the Date 

This program will take place on Tuesday, October 9, 2012 at 7:00 p.m. in Beachwood.  Registration will be available soon!

 

 

Night at the Akron Aeros 

akron aeros

The Akron Aeros invite you to Canal Park on Sunday, August 12th at 1:05 pm to enjoy a game and support CCFA and the Akron JCC at the same time.  This will be an amazing opportunity for us to raise awareness of digestive diseases at the game – via informational tabling, CCFA information up on the jumbotron, and we hope …a big audience presence in their CCFA gear.  For tickets contact Todd Rockoff at 330-867-7850 or todd@shawjcc.org.

 

Actor Ken Baumann of ‘The Secret Life of the American Teenager’

By ABC News, Jul 18, 2012

On TV, Ken Baumann plays sensitive, wholesome Ben Boykewich on the ABC Family hit, “The Secret Life of the American Teenager.”

In real life, Baumann also runs a publishing house, designs book jackets and has just written a novel. And he’s battling Crohn’s disease.

“It’s basically when your digestive system eats itself,” he said, discussing the condition today in an interview that aired on “Good Morning America.”

Crohn’s causes inflammation of the digestive tract. Its symptoms include pain and diarrhea, and can lead to potentially life-threatening complications.

Other celebrities who suffer from Crohn’s include the singer Anastacia and actress Shannen Doherty, who once said she didn’t want discuss it.  She feared talk of frequent bathroom breaks might affect how she was perceived.

ABC News’ Nick Watt asked Baumann why he wanted to discuss his condition. “Well, I was thinking about the 14-year-old fan of the show. Going through the pain and not knowing what it is,” the actor replied.

Baumann, 22, underwent surgery and lost 20 pounds. His dog, Oscar, weighs more than he does. “If you have a sense of humor, even when you’re in pain, it helps. When I did my first fart after surgery it was like hearing Beethoven’s Ninth,” he said.

There’s no cure for Crohn’s, but Baumann said he has it under control.

And even though the actor plays a kid on TV, he’s all grown up.

He married “Superbad” actress Aviva Farber, 28, last month in a secret ceremony in Malibu, Calif.  “We’re very democratic,” he said of their relationship, adding, “But I bow to her wisdom.”

So what’s next for “The Secret Life of an American Teenager”?

“I think we’ve already done impregnation,” he said. “But we meet so many fans who tell us their stories, which make us feel we haven’t even touched the tip of the iceberg.”

 

Call for Volunteers!

There are many opportunities to get involved with your local CCFA Chapter - from Take Steps, to our education programs, special events, or general office help - we are always looking for volunteers.  We are currently seeking volunteers the Movie Gala committee and Take Steps Akron Committee. 

BY POPULAR DEMAND .. .  we have created a volunteer interest form.  For a copy of this form, email tlowedonovan@ccfa.org and let us know how YOU would like to get involved with your local chapter!

  

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 or join the CCFA Northeast Ohio Group on LinkedIn.

 

Thank you to our valued partner: 

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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