News to Digest
November 2011 eNewsletter
Chapter Director’s Note
The month of November has been quite eventful for CCFA Northeast Ohio. So eventful in fact, that we find ourselves hitting the ‘send’ button on this November e-newsletter a full 5 days into the month of December. This month we held the Northeast Ohio Research Initiative reception, hosted our inaugural online auction, bid farewell to a valued staff member who has moved on pursue another opportunity, and saw the passage of Senate Resolution 199 establishing December 1 – 7 as Crohn’s and Colitis Awareness Week.
We took a new approach to the Northeast Ohio Research Initiative event this year - holding an intimate reception in the lovely home of Nancy and Gerald Goldberg on November 8th with 22 guests and 4 of our region’s top clinicians/researchers. The event would not have been possible without Host Committee Members Howard Edelstein, Jerry Goldberg, Bruce Hartzmark, and Don Klise; as well as participating doctors: J.P. Achkar, Jeffry Katz, Claudio Fiocchi, and Bo Shen.
The Reception began with delectable appetizers courtesy of Fire Food & Drink followed by welcoming remarks by Jerry Goldberg and Board President, Ron Teplitzky. Dr. Achkar presented an overview of IBD research milestones since 1967, providing a lay summary of the role that CCFA has played in major scientific breakthroughs. He shared that over the past two years, CCFA has directed $450,000 to support research here in Northeast Ohio.
Next, Dr. Shen spoke about his current research supported by CCFA: Pouchitis – A Human Model for Study of IBD. Pouchitis is a common complication resulting from the creation of an interior pouch following removal of the colon that can greatly diminish quality of life in patients. He gave an overview of his study which investigates the role of genetic biomarkers in prognosis and treatment of chronic pouchitis. Dr. Katz then gave brief remarks about IBD research coming down the pike at University Hospitals and how CCFA support helped past research projects get additional funding and support from other institutions including the National Institutes of Health.
Bruce Hartzmark, Emeritus Board Member wrapped things up by giving an overview of CCFA’s national research priorities, sharing his experiences as a lay-person reviewer on a research funding panel, and finally, laid out the goals of the Northeast Ohio Research Initiative 2011.
We set the ambitious, but reachable goal of raising $200,000 to support local research by the end of this calendar year, and need your support to reach this goal. So far, we have received lead gifts and pledges totaling $52,000. We aim to raise an additional $148,000.
As you know, each year, CCFA is challenged to raise more money to fund promising research projects in our own backyard and across the globe. The Northeast Ohio Research Initiative provides an opportunity for local constituents to make a commitment to Northeast Ohio as a hub of IBD research, to our local researchers who work tirelessly on these projects, and to finding a cure for Crohn’s and colitis. Currently, CCFA is funding 2 local research projects: a Junior Fellow at Case Western Reserve University and Pouchitis and genetics research conducted by Dr. Bo Shen at the Cleveland Clinic.
What will donations accomplish?
- $129,000 supports a Senior Fellowship Award for one year
- $90,000 supports a Career Development Award for one year
- $58,000 supports a Research Fellowship Award for one year
I hope you will keep CCFA and our Northeast Ohio Research Initiative 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. To make a contribution to support year-round programming or the Northeast Ohio Research Initiative, visit www.ccfa.org/chapters/neohio please make this an active link
Wising you and yours a happy, healthy holiday season,
Nancy and Gerald Goldberg
Take Shelter’ To Be Screened at Movie Gala on December 8th – Get Your Tickets Now
Our inaugural Movie Gala is quickly approaching – this Thursday. The event will feature a panel discussion on filmmaking in Ohio with Tyler Davidson, Producer of hit film ‘Take Shelter’ (recently nominated for 5 Independent Spirit Awards), Clint O’Connor, Plain Dealer Film Critic, and Amanda Barren, Reporter from WKYC Channel 3 and admission to the film of your choosing at the Capitol Theatre. Thanks to the efforts of Tyler Davidson, ‘Take Shelter’ will be showing at the Capitol Theatre for a single night – for our event. We couldn’t be more thrilled!
The evening will also include gourmet food stations catered by Luxe Kitchen & Lounge (recently named Top 20 Restaurant in Cleveland), red carpet photos by Scott Morrison of Discovery Photo, dessert, and a balloon-pop raffle.
* COCKTAIL ATTIRE*
5:30 Registration, Cocktails & Food Stations by LUXE Kitchen & Lounge, Red carpet photos
6:15 Panel Discussion on film making in Ohio
7:00 ADMISSION TO FILM OF YOUR CHOICE playing at the Capitol
9:00 Dessert, Coffee & Tea
9:30 Balloon-Pop Raffle Winners Announced
$60 ($20 tax-deductible) Regular Admission, includes 2 drink tickets & film ticket
$100 ($30 tax-deductible) VIP Admission, includes open bar & film ticket with reserved seating
To purchase tickets visit: http://online.ccfa.org/moviegala2011 please make an active link
Your attendance will support CCFA Northeast Ohio's year-round educational programs and help expedite finding a cure for Crohn's and colitis.
A Fond Farewell from Katie Tricarichi
“It was with mixed emotions that I tendered my resignation from CCFA. I’m very excited to begin my work at Cleveland Clinic and make an impact in funding research for a cure for Crohn’s and colitis but am sad to say goodbye to the family I have made here at CCFA. The relationships I have built with my team captains, walkers and volunteers have made my time here a truly unforgettable experience. I am going to miss all of you. Thank you for two years filled with laughter, compassion and kindness. The memories I have made with each and every one of you will be with me wherever I go. I will always be grateful to CCFA for giving me the opportunity to meet such an amazing group of people. If you’re ever at the Clinic make sure to say hello!”
Take Steps Cleveland – Save the date for Sunday, June 3
Mark your calendars for Take Steps Cleveland, to be held on Sunday, June 3rd at Wade Oval in University Circle. Registration is now open.
The first 15 people to register for the walk will be entered to win $50. Register now at www.cctakesteps.org/cleveland2012 Have questions about how to get started? Call or email Lesley Hoover, Chapter Director. She will be the main point of contact until the new Take Steps manager is hired in the new year.
Next year’s local hero is Danny Wilbur, age 6, one of the kids in our community currently battling Crohn's disease. At only four years old Danny began having high fevers up to 105 and was vomiting several times a day. This would come in waves that lasted from days to a week at a time. He lost weight, he was weak, and he slept often. His labs showed malnutrition and severe anemia. Because his family had just returned from a trip to see their extended family in Israel, infectious disease with a third-world germ had to be ruled-out first. Danny had countless lab draws, x-rays of his belly, an MRI of his brain, an ultrasound of his liver, an upper GI series, endoscopy (twice-- once with the camera capsule) and colonoscopy, CT scan of the abdomen, and a bone marrow biopsy.
He was hospitalized in May of 2009 for 2 days, and had some genetics testing done, since the previous testing for Crohn's disease was inconclusive. He was under anesthesia three times in a month, and was a brave soldier throughout the entire ordeal. He was put on a prolonged dose of steroids when he was finally diagnosed and he blew up to twice his previous size over that summer. When school started again that fall, his classmates all asked "who's the new Danny?" - he was unrecognizable. The second course of steriods was necessary when Daniel failed Imuran and became acutely ill again.
Although the medicine he is taking is keeping his Crohn's in control, the Wilbur family recently had a scare when his bloodwork showed evelated liver enzymes as an indicator of toxicity from one of his medications. Thankfully, with some adjustment of the dose he seems to be tolerating this regimen well. Danny is now six years old and we are thankful that he lives a relatively healthy and happy life as a kindergardener.
Last year Danny and his family hosted a fundraiser that was the brainchild of Danny’s older sister Maddy - Children Cycle for Crohn's and Colitis, held at Legacy Village. It raised over $12,000 for CCFA's mission critical research and programming! We are so pleased to have the Wilbur family participate in Take Steps Cleveland 2012 - for other families struggling to deal with a child’s illness to know they are not alone, and to give a face to an all too often silent disease. Thank you Danny for sharing your story!
Free Bilingual Teleconference/Webcast Next Tuesday: ‘Managing IBD: Taking Charge of Your Disease’
December 6 at 1:00 PM ET.
1:00 PM to 2:15 PM Eastern Time
12:00 PM to 1:15 PM Central Time
11:00 AM to 12:15 PM Mountain Time
10:00 AM to 11:15 AM Pacific Time
There are many goals of managing inflammatory bowel diseases (IBD), and choosing an appropriate treatment plan can be challenging. Join this teleconference/webcast on December 6 to learn more about how to effectively manage IBD. Physician expert Miguel D. Regueiro, MD will discuss treatment options and lifestyle changes that can help you take charge of IBD, and explain the importance of treatment adherence in remission. There will also be an interactive Q&A session.
Register online: http://www.ccfa.org/webcasts/manageibd or by calling toll-free: 877-547-5641, ext 310
This program is supported by a charitable contribution from Shire.
2011 Clinical & Research Conference
Physicians & Healthcare Professionals: Register Now
for CCFA’s “Can’t Miss” Conference on IBD Research!
With the increasing prevalence of Inflammatory Bowel Diseases (IBD), the Crohn’s & Colitis Foundation is committed more than ever to providing healthcare professionals with the latest information on the investigation and diagnosis of Crohn’s disease and ulcerative colitis. We envision our 10th annual 2011 Advances in Inflammatory Bowel Diseases, Crohn’s & Colitis Foundation’s Clinical & Research Conference, coming up in December, as a unique opportunity for those on the front lines of conducting IBD research, treating patients, or just wanting to share their knowledge with peers in a highly effective and impactful way.
We cannot emphasize enough the importance and benefits of your attendance at this annual conference. This is an exclusive event where you can participate in the highest quality sessions, presented by expert specialists and key thought leaders in the field.
In addition to observing and learning, you may also take this opportunity to share and present data or any information related to improving patient well being that you feel would be relevant or helpful to your colleagues. We invite you to share your research initiatives by submitting an abstract for consideration by the Scientific Committee. Accepted abstracts will be published in the journal Inflammatory Bowel Diseases and scheduled for oral or poster presentation at the conference.
Here are some of the highlights the conference will feature:
Best practices related to treating patients with IBD
Advanced management strategies for challenging cases
New approaches and techniques to optimizing care of patients
Advances and breakthroughs in the field
If you’ve attended this conference in the past, you will find some new additions this year.
- The impact of personal or family cancer history on treatment choices
- Advances in balloon–assisted enteroscopy
- Managing side effects due to therapy – skin side effects or opportunistic infections
- Assessing drug levels (immunomodulators /anti-TNF) to guide therapy
- The Future of IBD Healthcare
- The Future of Clinical Research in IBD
- Mechanisms of intestinal homeostasis mediated by the microbiota
- Animal models of IBD
- Induction, initiation, and perpetuation of inflammation in IBD
- Treg cells in IBD
- Two full half-days expanding knowledge on the management of younger patients
WHEN AND WHERE
This year’s conference will take place December 1-3, 2011 at The Westin Diplomat Resort & Spa in beautiful Hollywood, Florida, just a short drive from the Ft. Lauderdale International Airport. While attending the conference, you will also enjoy all the amenities the Westin has to offer, including luxurious accommodations, magnificent views, wonderful dining, and great room service.
Discounted Registration Deadline: November 23, 2011
Presentation Dates: December 1-3, 2011
There are 4 easy ways to register:
+1 (678) 242 0920
+1 (678) 242 0906
11675 Rainwater Drive
Alpharetta, GA 30009, USA
We hope that you will join us at the 2011 Advances in Inflammatory Bowel Diseases Crohn’s & Colitis Foundation’s Clinical & Research Conference. By being part of this conference, you will have an opportunity to expand and enrich your knowledge about IBD, while helping us get one step closer to finding a cure for chronic, debilitating, lifelong digestive diseases.
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