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News to Digest, May 2012

IN THIS ISSUE:

  • California Pizza Kitchen benefit day tomorrow
  • Free Cleveland Clinic webchat tomorrow
  • Take Steps Cleveland THIS SUNDAY
  • Akron Aeros night, August 12th

Chapter Director’s Note

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It was wonderful to see so many new and familiar faces at our VIVA! Cinco De May event on May 3rd.  276 attendees enjoyed the musical stylings of Run Avril Run and Josh Shapiro, food by the Chubby Cook and inspiring remarks by Dr. Jonathan Braun from UCLA, Board President Ron Teplitzky, and honored guest Dana Bernstein.  Thank you to our fabulous hosts, Cari and Dr. Eric Marderstein.  We are pleased to announce the event raised $50,000 (gross).  All proceeds will be directed to genetics research funded by CCFA across the United States.  CCFA has played a role in every major scientific breakthrough in Crohn’s and colitis research, including the discovery of the first gene for Crohn's disease. We can take great pride in knowing that Northeast Ohio is a hub of IBD research with great institutions like the Cleveland Clinic, University Hospitals, and Case Western.  We are open to finding a cure wherever it may be - perhaps it’s here in Northeast Ohio or maybe on the other side of the country.  At VIVA! we raised funds to support the best of the best genetics research with the shared goal of finding cures.

Thank you to everyone who attended and supported this new event!  Photos are now available at http://www.lindseybeckwith.com.  Just click on the ‘View Your Photos’ link and enter Event ID ‘ccfa2012’

Lesley Hoover

Lesley Hoover, Chapter Director

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marderstein

 Dr. Eric & Cari Marderstein and Linda & Jan Moskowitz

 

Welcome Caitlin Randall, Take Steps Manager

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We're excited to welcome Caitlin Randall to her new role!  She started with us as in intern in February and proved to be a fast learner, creative thinker, and an asset to our office.  Caitlin was a big part of the success of our VIVA! Cinco De Mayo event.  Caitlin's enthusiasm and work ethic became clear as she increased her time in the office from two to five days.  She became indispensable and further extended her committment by offering to help with Ask the Experts and the Take Steps Kick Off Party. 

Caitlin has recently returned to Cleveland after living in New York City for the past five years where she worked in marketing and sales.  If Caitlin isn't anxiously waiting for the mail man to arrive so she count RSVP's, she is spoiling her adorable five month old niece, walking her tea cup yorkie Maximillian, or practicing yoga. We feel lucky to have her as a part of the CCFA office.  Please join us in welcoming her!

  

Dine for CCFA

California Pizza Kitchen

Join us for a benefit day: 11:00 am - 9:00 pm at California Pizza Kitchen in Legacy Village on Wednesday, May 30th. Bring in this FLYER and present it to your server when ordering.  The fundraiser will take place ALL DAY for dine-in, takeout or curbside orders, 20% of your check will be donated to CCFA. 

  

Cleveland Clinic IBD Webchat

The Cleveland Clinic will host a patient web chat on IBD on Wednesday, May 30th at noon.  The chat will be hosted by Jean-Paul Achkar, M.D: CCFA Board Member and Emre Gorgun, MD.  It will focus on medical and surgical treatments for IBD.  The web chat is free and open to ALL patients.  To register, or find out more information visit: http://www.clevelandclinic.org/health/chatreg/.

 

Yoga for Take Steps

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Come relax and enjoy a YOGA class on Saturday, June 2nd at 6:30pm at the Yoga Lounge in Hudson.  The class will be taught by Charry Morris and will be tailored for all levels of experience.  Donations will be accepted with proceeds supporting Take Steps.  The Yoga Lounge offers a wide range of classes and workshops for all levels and ages designed to help bring balance to your body and mind.  The Yoga Lounge is located at 89 First Street, Suite 207, Hudson, OH 44236.  For more information about the class, call the Yoga Lounge, 330-653-3377 or visit:  www.yogaloungehudson.com.

  

Take Steps Cleveland - There is Still Time to Register before Sunday!

TS LOGO WITH PEOPLE 

Takes Steps is only 5 days away!  Don't miss out on the festivities this Sunday, June 3rd. 

Congratulations and a BIG THANK YOU to the current top 5 fundraising teams:  Team Deuce (currently at $3,125), Dan’s Fans, University Hospitals Digestive Health Institute, Team Serfass, and Ethan's Troup.

Danny Wilbur Cleveland TS 2012 Hero Pic

As his parents; Carly & Jon, and his siblings; Maddy, Olivia, Zeke, and Izzy attest, our local hero Danny Wilbur treats life as an adventure.  Whether he’s jumping on the trampoline, playing with his hamster; Nibble or his bunny; JB, doing karate, or playing in the tree house, Danny is an explorer who’s always up for the next adventure.   Don't miss Danny and his mom Carly on his next adventure on the WKYC, Channel 3 noon news this Friday, June 1st.

Danny and Mom

WALK DAY SCHEDULE & LOGISTICS

Parking: The meters around Wade Oval are free on the weekend – you may park without feeding the meters.  The parking lots for the Veteran’s Administration (VA) Hospital Parking on Magnolia between East 105th & East 108th are also free on the weekends. 

Getting there: Need an address to enter into your GPS?  Use 1 Wade Oval Drive, Cleveland Ohio

Schedule:      5:30 registration & festivities begin

  • Paper fan decorating at the Kid’s Tent
  • Special temporary tattoos
  • Corn hole
  • Bouncy house
  • Snacks & beverages
  • Inspiring speakers
  • Entertainment
  • Free giveaways
  • Banner decorating contest ON STAGE for the top 5 fundraising teams

  6:45  2-mile walk commences, led by Danny Wilbur and his family

  7:15  the festivities continue……...

 Register here to Take Steps and be heard. 

 

Thank you to our generous Walk Sponsors!

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UH Digestive Institute Swagelok

JANSSENShire Logo

Warner Chilcott.gifSherwin Williams

 Abbott LogoNorthshore Gastro Cleveland

SansonFrantz Ward

  

 

Team Challenge

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Good luck to the 11 participants from Northeast Ohio who will be running in the Virginia Wine Country Half Marathon in Loundoun County, Virginia on June 2nd.  The event weekend kicks off with a great pasta party and concludes with a finish line wine tasting.  Look for all the details about race weekend in our next newsletter.

Team Challenge is our group training program, our next destination is Vegas!  We prepare you to run or walk a half-marathon while helping raise funds to find a cure for Crohn's and colitis. When you join Team Northeast Ohio, you'll meet great people, get into great shape, and test your physical and mental strength with a destination half-marathon. 

Learn more about our Vegas Half Marathon at an upcoming info meeting:

  • Saturday, August 4th, 8:00 a.m.  - Mojo's Coffee & More, Bay Village (includes coffee)
  • Tuesday, August 7th, 6:30 p.m.  -  Pub Bricco, Akron (includes happy hour apps)
  • Monday, August 13th, 6:30 p.m.  -  Whole Foods, Woodmere
  • Wednesday, August 15th, 6:30 p.m. - Red Hawk Grill, Concord (includes happy hour apps) 
  • Tuesday, August 21st, 7:00 p.m -  LA Petes, Independence (breakfast included)
  • Thursday, August 23rd, 6:00 p.m. - Hard Rock Café, Cleveland Kick Off Party to Follow


This is truly a life-changing experience!

   

 

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.

 

I’ll Be Determined Website: Celebrates One Year Anniversary

IBD banner

Have you visited yet?

The I’ll Be Determined website (http://www.ibdetermined.org/) will just celebrated its one year anniversary on March 29th and we wanted to share some highlights from the past year and thank you for all of your efforts in spreading the word about this new site!  I’ll Be Determined is an interactive patient online resource that was designed to help patients take a closer look at how they are living with IBD and empower them to learn about their IBD management choices.  Through February we have had over 67,000 total visits to the site from over 52,000 unique visitors.  Users have proactively completed the four interactive educational modules – Treatments, Diet, Complications, and Quality of life – with over 7,200 badges earned and over 14,000 video views as well!

Users have also been active on THE WALL throughout the past year with over 1,100 declarations posted through February.  Some recent inspirational WALL posts include:

  • I'll Be Determined to find a treatment that works, stay healthy, and live life as the smart, motivated girl I am. I am in control of my UC- not the other way around- and it won't stop me from following my dreams. We can all achieve more than our IBD!
  • After dealing with Crohn’s disease for six years, I will not allow it to discourage me from following my dream of going to medical school. I'llBDetermined to make it happen no matter what.
  • I'll Be Determined to live my life to the fullest, while keeping my disease under control. I'll Be Determined to not let it get me down. I'll Be Determined to live. I'll Be Determined to be more determined.

  

Transitions in IBD Teleconference

 Transitions in IBD

Program Archive and Extended Q&A Now Available!

Crohn's disease and ulcerative colitis, two inflammatory bowel diseases (IBD), need lifelong management. A smooth transition between pediatric and adult IBD care is crucial. This program discusses what is needed for a successful changeover and improved quality of life in young adulthood.

The content of this FREE webcast was derived from a live telephone/web education program presented by the Crohn's & Colitis Foundation of America in collaboration with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) and the NASPGHAN Foundation for Children's Digestive Health and Nutrition that was held on the evening of Thursday, March 15, 2012.

NEW! This program also offers an extended Q&A presentation that features questions from webcast participants that were not answered during the live program.

Speakers

 

Laurie N. Fishman, MD, Attending Physician, Children's Hospital Boston, Assistant Professor of Pediatrics, Harvard Medical School, Boston, MA

Maureen Kelly, MS, RN, CPNP, Clinical Assistant Professor, School of Nursing, Nurse Practitioner, Division of Pediatric Gastroenterology, UNC at Chapel Hill, Chapel Hill, NC

 

 

 

Learning Objectives:

  • Identify the differences between care for pediatric and adult patients with IBD
  • Explain the processes and goals for transitioning from pediatric to adult IBD care
  • Review the differences in IBD treatment and management options when transitioning care
  • Define best practices to improve the quality of life for patients who are transitioning from pediatric to adult IBD care
  • Click here to view the webcast and extended Q&A presentations, listen to the audio recordings, and read or print program slides and transcripts.
  • The presentation from the live webcast offers Continuing Education (CE) credits for nurses; the extended Q&A presentation does not offer CE credit.

 

SAVE THE DATE:  25th Annual Golf Tournament

Golf

Our 25th Annual Golf Tournament will be held August 20, 2012 at the beautiful Chagrin Valley Country Club.  If you are interested in participating in this year's tournament call the Northeast Ohio chapter office, 216-524-7700.   

Click here for Photos from last year's event .  To view, enter username: neohioccfa and password: crohns.

 

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 for our second annual Movie Gala committee and the Take Steps Committee. 

BY POPULAR DEMAND .. .  we have created a volunteer interest form.  To get started click here: volunteer intake form and let us know how YOU would like to get involved with your local chapter!

  

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 valued partners: 

Cleveland Clinic DDI Logo sized small

Lead Chapter Partner

  

UH Digestive Institute

 

 

 

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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