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News to Digest, February 2013

IN THIS ISSUE:
  • Ask the Experts - Register Now
  • In Memorium: Suzanne Rosenthal
  • Take Steps Cleveland - Voinovich Park
  • Team Challenge Registration - 50% off until March 15th
  • 26th Annual Golf Tournament -Save the Date
  • Flu Cases on the Rise, IBD Patients at Increased Risk
 

Chapter Director’s Note

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As you know, CCFA Northeast Ohio is a trusted educator, a fervent supporter of cutting edge research, and a passionate advocate.  Every day we help all kinds of people in Northeast Ohio get the health tools, support, and information that they need. 

For patients and families learning about IBD and staying informed on new treatments is an important step toward taking charge of their illnesses. CCFA’s education programs provide the opportunity to learn about new treatments, coping, pediatric issues, surgery, new research, and more – from the experts themselves (gastroenterologists, colorectal surgeons, dieticians, social workers, etc.). These community programs also provide a forum for patients to hear from their peers– other patients.

On Saturday, March 16th, we will host our largest educational program of the year: ASK THE EXPERTS. This program is open to the public; we welcome patients, friends, family, and caregivers.  

Whether you are newly diagnosed, a long-time patient, family member, friend, or a caregiver,  ASK THE EXPERTS 2013 has something for you. Reservations required. FREE for CCFA members, $5 for non-members Location: Holiday Inn: 6001 Rockside Road, Independence, registration begins at 8:30 a.m. As you can see from the program details below, we have a robust program planned. I hope you will join us!

ASK THE EXPERTS SESSIONS:

1. Medical therapy for IBD
Dr. Jeffry Katz, Case Medical Center/University Hospitals         
2. Surgery for IBD
Dr. Jeremy Lipman, MetroHealth            
3. Health Maintenance: Vaccines, bone screening, and cancer screening
Dr. Yinghong Wang, Cleveland Clinic
4. Safety and side effects of medical therapy
Dr. JP Achkar, Cleveland Clinic
5. Addressing psychosocial needs/patient panel
Moderated by Dr. Katz
Panel members include Colin Harris, Tocombamaria Murphy, Sarah Weiss 
6. Ask the Experts Panel
         All Doctors listed above   

Q & A to follow each session

Visit www.ccfa.org/chapters/neohio or call (216) 524-7700 ext. 2 to register. * Special presentation on Team Challenge and Take Steps to follow program.

Lesley Hoover

Lesley Hoover, Chapter Director

  

In Memorium: Suzanne Rosenthal

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Suzanne Rosenthal, co-founder of the Crohn’s& Colitis Foundation of America (CCFA), died February 10th. She was 78-years old.

Rosenthal, who herself was diagnosed with Crohn’s disease in 1955 – a type of inflammatory bowel disease (IBD) –  co-founded what was previously known as the National Foundation Lietis and Colitis with her husband Irwin M. Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, MD, in 1967.

“There are no words to clearly express our gratitude to Suzanne for all that she has done for the 1.4 million people who suffer from these diseases,” said CCFA President Richard Geswell. “She will be greatly missed. Her legacy will live on and we will not stop until we find cures.”

Along with being instrumental to the founding of CCFA, Rosenthal held a number of other positions at the organization. She served as the president of the foundation’s Greater New York Chapter and was also the National Chairperson of the Board from 1987 to 1991. She served as Chairperson Emeritus of CCFA's Government Affairs Task Force, and was a champion in all advocacy efforts of the foundation.

Read the full article in the Non-Profit Times.

 

Nutrition Webcast

Sarasota Nutrition

 Save the date for our upcoming webcast on nutrition scheduled for Wednesday, April 10 from 1:00 PM to 2:15 PM (EST). One of the featured speakers is Lisa Cimperman from Case Medical Center/University Hospitals. Check our website - more information coming soon!

 

Team Challenge - Choose Your Challenge

 Team Challenge February

 

Take Steps Cleveland

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The 2013 goal for Take Steps Cleveland is 1,000 walkers and $156,000 raised (or more)-AND we are going to need your help to get there!

This month The Northeast Ohio Chapter was thrilled to announce that Take Steps Cleveland 2013 brand new location is VOINOVICH BICENTENNIAL PARK!   At the end of the East 9th Street Pier in Cleveland, Ohio you will find 4.5 acres of beautiful, artistically-terraced greens, surrounded on all sides by picturesque views of Lake Erie and the downtown Cleveland Skyline and the perfect location for the 6th Annual Take Steps Cleveland.

Register now so you don’t miss out on all of the fun! www.cctakesteps.org/cleveland 

Date: Sunday, June 23rd

Time: Registration: 3:00pm

           Program & Walk: 4:00pm

           Festival, Food, Music, Games, and more- following the walk!

Have questions or want more information? Contact Take Steps Walk Manager, Caitlin Randall: 216.524.7700 ext. 3 or 646.276.1002 or Email: crandall@ccfa.org

www.cctakesteps.org/cleveland

 

Local Support Groups

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Akron/Canton Support Group:

750 White Pond Drive, Akron, OH 44320
shellyccfa@zoominternet.net
Meets: Third Thursday, Monthly 7:00 PM

West Side Support Group:

502 Cahoon Rd, Bay Village, OH 44140
Bay Village Public Library
baysnm@sbcglobal.net
Meets: Third Wednesday, Monthly 7:00- 8:30 PM

East Side Support Group:

8140 Auburn Rd, Painesville, OH 44077
Auburn Career Center - Technology Learning Center, Room 116

lorrieosbornehirko@yahoo.com
Meets: Third Tuesday, Monthly, 6:30 to 8:00 PM

 

CCFA on the Radio, Board Member, Tocombamaria Murphy

  wzak radio

Click here  WZAK interview originally broadcast Sunday, February 17 2013.

  

Camp Oasis

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Our 2013 session will again be held at Camp Copneconic in Fenton, Michigan. Applications available 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 aged 19 and up at time of application).  Click here to learn more or contact Terri Lowe-Donovan: tlowedonovan@ccfa.org, (216) 524.7700 ext. 2. 

 

Alliance Art Opening

Bear painting
‘Fighters' an Art Exhibit to raise awareness of chronic diseases
Opening Reception: Friday, March 15, 2013 at Jupiter Studios                                                        

Hosted by local artist Chrystal Robinson

Jupiter Studios: 346 E Main St, Alliance, OH, 44601
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.Deadline for submissions: March 1.

Contact Chrystal with submissions and questions: mystikchrystal@hotmail.com or visit www.ccfa.org/chapters/neohio

 

Save the Date – 26th Annual Golf Tournament

 

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

 

Study Finds No IBD Risk With Acne Medication Isotretinoin 

accutane bottles

HealthDay (2/21, Preidt) reports that a study published in JAMA Dermatology "counters the notion that the prescription acne drug Accutane [isotretinoin] raises the risk of Crohn's disease or colitis in women." In fact, "the study of more than 45,000 women found no such link between Accutane...use and these illnesses, which are collectively known as inflammatory bowel disease (IBD)."
                                              

Flu Cases on the Rise in the US, Inflammatory Bowel Disease Patients at Increased Risk

 January 8, 2012- (New York, NY) – The latest report from the Center for Disease Control and Prevention (CDC) shows the flu is now widespread in 41 states, and the number of flu cases is expected to increase. The Crohn’s& Colitis Foundation of America (CCFA) is reminding patients with Crohn’s disease or ulcerative colitis (collectively known as Inflammatory Bowel Diseases or IBD) to get an influenza (flu) immunization if they have not already.

“Patients with chronic diseases, including patient with ulcerative colitis and Crohn's disease, are at increased risk of infection with the influenza virus," said Dr. Jason Swoger, an advisor from the CCFA Education Committee. "Patients with IBD are often on medications that affect their immune system, which make them more susceptible to contracting influenza, and can also lead to a more severe disease course."

IBD patients can prevent flu complications, which can include pneumonia, blood infections and death in extreme cases, with an annual flu shot. Current recommendations are for all patients with IBD to receive a flu shot on an annual basis.

"Patients with IBD should not receive the intranasal influenza vaccine, as this is a live virus. Only the flu shot should be given to these patients," adds Dr. Swoger.

Flu season usually peaks in January or February, but it can occur as late as May. Early immunization is the most effective, but it is not too late to get the vaccine in December, January, or beyond. The best time to vaccinate is when patients are newly diagnosed with IBD and are not on any form of immunosuppression such as medication and radiation.

CCFA does not endorse specific treatments or vaccinations, and always encourages patients to discuss their treatment options and the risks associated with their physicians. Learn more about the flu vaccine for IBD patients at: http://www.ccfa.org/assets/pdfs/Flu-IBD2010.pdf.

 

Uceris available for UC patients in March

Medication

On Jan 14th the Food & Drug Administration approved the drug UCERIS (Budesonide) for the induction of remission in patients with mild to moderate ulcerative colitis.   Uceris can be used for patients who are not responding to other medications prescribed for Inflammatory Bowel Diseases.

"In patients that are not responding to 5-ASAs or cannot use 5-ASAs with mild to moderate disease activity, Uceris may be used as an alternative to prednisone for inducing remission," says Dr. Faten N. Aberra. "Uceris is only indicated for inducing remission for up to 8 weeks and not a maintenance medication."

The medication will be available to the public in March 2013.  For more details on this new medication check out the Santarus website: http://ir.santarus.com/releasedetail.cfm?ReleaseID=733438.

 

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

 

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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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