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News to Digest, June 2013

IN THIS ISSUE:
  • Take Steps Cleveland Raises $141,000, 92% to Goal
  • Volunteer Spotlight: Sean Novak
  • Free Webcast: Managing the Cost of IBD Care
  • Canton Education Seminar on Treatments
  • Bridgestone Round Up
  • Akron Education Seminar on Nutrition
  • Asacol No Longer Available
 

Chapter Director's Note

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I am pleased to report that CCFA has received the highest rating in the most recently published Better Business Bureau Wise Giving Guide published by the BBB Wise Giving Alliance. The Alliance helps donors make informed giving decisions and promotes high standards of conduct among organizations that solicit contributions from the public. You can see our full profile here.

 In particular, we take pride in the fact that CCFA's national program expenses measured an 80.4. This measure reflects what percent of its total budget a charity spends on the programs and services it exists to deliver. (Dividing a charity's program expenses by its total functional expenses yields this percentage.) This measure reflects what percent of total budget CCFA spends on the programs and services we exist to deliver. We hope you will also take pride in this figure and athe amazing return on investment it demonstrates.  There are many worthwhile causes to support and we are grateful that you choose to support CCFA – with your time, talent, and treasure. Thank you for all you do for CCFA! 

 

 Volunteer Spotlight - Sean Novak

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For those of you who attended Take Steps Cleveland 2013 you can attest that it was day filled with sunshine, fun and lots of fundraising success. But the day would not have happened without the unending support of the Take Steps Planning Committee most notably Sean Novak.   Sean Novak joined CCFA as a volunteer this year as a Take Steps Planning Committee Member, and more than fulfilled his job description. Sean was instrumental in the planning and execution of the walk, going above and beyond the call of duty. He was involved in every step of the planning process from attending every committee meeting to event set up and take down, to registration and EVERYTHING in between.

 Sean has been a Crohn’s patient for 18 years-He and his wife of 7 years, Ashley, are the proud parents of two wonderful little boys, Austin (4) and Parker (1).  In his professional life, Sean is a Systems Analyst for the Cleveland Clinic’s department of eRadiology.  Sean started volunteer work much earlier in life with various organizations,  and as a member of the SITES program at North Olmsted High School.  “Suffering from Crohn’s disease is one of the reasons I have decided to become a CCFA volunteer, but the bigger reason is to do whatever I can to help find a cure so that others may not have to suffer in the future.  I plan to continue my work with CCFA as long as I am able to, and I refuses to let this disease get in the way of living my life,” said Sean. On behalf of the Northeast Ohio Chapter and Cleveland Take Steps we would like to thank and commend Sean for his valiant efforts in helping to make the Take Steps Cleveland such a success!

 

 Education Program in Canton 

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On July 30th we will be hosting, Treatment Approaches in IBD: Options to Consider, which will present information on the risks and benefits of medications, surgery, and integrative treatments in IBD.  The presenter will be Kenny S. Yung, M.D. of Gastroenterology Specialists, Inc.  There will be opportunities to ask questions and interact with healthcare professionals as well.  This program is free and open to the public, taking place at  Aultman North at 6:00pm-7:30pm. 

Register now:

Web: http://www.ccfa.org/chapters/neohio  Email: neohio@ccfa.org   Phone: 216-524-7700 ext. 2

Free Webcast: Managing the Costs of IBD Care
Register for our upcoming webcast Managing the Costs of Your IBD Care” and get tips for patients and caregivers on managing healthcare costs. Space is limited -- register online today!

 

 

Take Steps Cleveland

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Thank you to everyone who helped to make Take Steps Cleveland such a great day. Every step makes a difference—and the steps you took on June 23rd will truly make a difference in the lives of the 20,000 children and adults living right here in Northeast Ohio. Without your support we could not have made the day so special and it couldn’t have been done without the tremendous support of all our volunteers, walkers, team captains and donors

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With everyone’s help we raised over $141,000 which is a 25% increase from 2012, for critical research, education, and funds to support initiatives for those who are affected by these painful and unpredictable diseases. We are 92% to our Take Steps Goal and WE NEED YOUR HELP TO GET TO 100%! Just because we’re done crossing the finish line, doesn’t mean you can’t continue to support the Foundation through your continued fundraising efforts. Your online fundraising page will remain active through the end of 2013 so don’t forget about the post walk incentives you can still earn!

 

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Post-Walk Incentives: 

 

$1,000: Training T-shirt or Fleece Pull Over

$2,500: Rolling Cooler or Islander Jacket

$5,000: Fleece Throw or Mini Camcorder

$10,000: Kindle E-Reader or Keurig Brewing System

 

Your fundraising for Take Steps Cleveland 2013 directly supports the research of expert scientists and clinicians at leading institutions across the country; a wide range of educational programs for patients and health-care professionals; and supportive services to help people coping with these chronic intestinal diseases

We encourage you to continue to spread awareness about Crohn’s and colitis to the community and while asking friends, coworkers, community members, doctors, and local businesses to support your efforts. Take advantage of the summer months to plan fun fundraising events! 

 

Stop Crohn's

Your support of CCFA is critical and we truly value all that you do. We look forward to seeing you at future events and programs. 

 

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 Thank You to our Generous Take Steps Cleveland Sponsors  

National Sponsor

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       Lead Chapter Partner

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UH Digestive Institute

National Sponsor

Shire

 

National Sponsor

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National Sponsor

Santarus

 

Want to make a donation to help Cleveland Take Steps get to 100%???

Contact Caitlin Randall at crandall@ccfa.org or 216.524.7700 ext. 3

 

 

Take Steps Akron

Register now

Registration for Take Steps Akron 2013 is NOW OPEN!!!!!

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Join us Saturday, October 19th at Lock 3 Park in Akrong for the Fourth Annual Take Steps Akron Walk and help us continue to TAKE STEPS to raise over $65,000 to support research, education and community programs.  To Register Today, please visit:  www.cctakesteps.org/akron

 

We are looking for Take Steps Akron Planning Committee Members! Please Contact Take Steps Walk Manager  Caitlin Randall if you are interested, at: Crandall@ccfa.org or 216.524.7700 ext. 3

 

 

26th Annual Golf Tournament - Join us for Dinner & Cocktails Only, or a full day            golf evite

Admission options range from Dinner & Cocktails Only tickets to the entire day of activities. 

10:00    Registration
11:30     Lunch
1:00       Shotgun Start
6:00       Cocktails & buffet dinner with auctions, awards *

 *We are currently securing items and gift packages for the live and silent auctions, please contact us if you have something to donate: lhoover@ccfa.org 

Visit  http://online.ccfa.org/golf26 for details, pricing, &  tax-deductibility.  This event would not be possible without the following sponsors.   

Title Sponsor:

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Lead Chapter Sponsor 


Bridgestone Round Up Image

National Round-Up Campaign at Bridgestone Stores
July & August 2013

2,200 retail locations nationwide, including Firestone Complete Auto Care, ExpertTire, Tires Plus, and
Wheel Works, will support the efforts of CCFA through a program that offers customers the opportunity to round up their transactions to the nearest dollar for CCFA.

Remember CCFA for all your auto needs this summer!

Power of Two
Power of Two is a CCFA support program that connects people facing challenges brought on by Crohn's disease and ulcerative colitis. Individuals seeking help are matched with a peer mentor who has experienced similar medical and personal concerns. Power of Two peer mentors are trained to support participants through phone, email, or video chat exchanges. 

The program is open to people with Crohn’s or colitis and those with children, family members, or other loved ones with these diseases. Anyone over the age of 10 can apply to be a mentor to provide insights into living with Crohn’s and colitis. (Individuals under the age of 18 will need parental/guardian consent.)

Whether you are seeking support or are willing to help others as a peer mentor, please contact Becky Johnson-Rescola at 216-524-7700 , ext.5 or bjohnsonrescola@ccfa.org to learn more about Power of Two!

 

The Crohn’s & Colitis Foundation of America’s Day on the Hill Goes Virtual
This year marks CCFA’s 11th annual visit to Congress to advocate on behalf of IBD patients. In addition to 18 teams making over 150 visits and hosting a Congressional briefing highlighting specialty tier legislation which had more than 100 attendees, we held our first virtual IBD Day on the Hill. For the first time, constituents could make their voices heard remotely by following CCFA on Twitter @CCFA and using the hash tag #CCFAHillDay. 

This year, CCFA supports The Patients’ Access to Treatments Act, introduced by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA), which limits cost-sharing requirements applicable to medications in specialty drug tiers to the dollar amount applicable to drugs in a non-preferred brand drug tier for private insurance. In addition, advocates will appeal before legislators with the following recommendations:

$32 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH:
Hope for more effective treatments and a cure for IBD lies in biomedical research sponsored by the NIH. CCFA joins with other patient organizations and medical societies in recommending an increase for the agency in FY14. This increase would bring NIH’s budget to $32 billion and facilitate expanded basic, clinical and genetic research on IBD. CCFA also recommends a corresponding increase for the National Institute of Diabetes and Digestive and Kidney Diseases, the lead institute for IBD research at NIH.

 $680,000 FOR THE IBD EPIDEMIOLOGY PROGRAM AT CDC:
This program is yielding invaluable information about the prevalence of IBD in the U.S. and expanding our knowledge about the demographic characteristics of the IBD patient population.  The data derived from this study will provide the most comprehensive analysis of the etiology of IBD, why the course of illness varies among individuals, and what environmental and treatment factors may improve patient outcomes. Funding is provided through the Labor-HHS Appropriations Bill.  FY13 funding was $680,000.

 $50 MILLLION FOR THE DOD PEER-REVIEWED MEDICAL RESEARCH PROGRAM AND INCLUSION OF IBD AS AN ELIGIBLE DISEASE :
CCFA requests that IBD be listed as a condition eligible for study under the Department of Defense Peer-Reviewed Medical Research Program in the DOD Appropriations Bill. The PRMRP supports innovative biomedical research on a number of medical conditions impacting military personnel. IBD has been included as an eligible disease in previous defense appropriations bills and the PRMRP has funded IBD research proposals following favorable peer-review of IBD grant applications.  FY13 funding for the program was $50 million.

Congressional Crohn’s and Colitis Caucus, co-chaired by Representatives Ander Crenshaw (R-FL )   and  James Moran (D-VA), works to promote awareness of IBD, the need for expanded research at the National Institutes of Health and  the Centers for Disease Control and Prevention, and the importance of accessible insurance and disability coverage for this vulnerable patient population. 

This year marks Congressman James Moran’s first CCFA Hill Day as the new co-chair of the Congressional Crohn’s and Colitis Caucus. Moran is serving his 12th  term as U.S Representative from Virginia’s 8th  District. Moran has been a leader on many healthcare issues, and supported the passage of the monumental healthcare reform, the Affordable Care Act, which was signed into law in March of 2010 and will be fully active starting January 2014. He serves as co-chair of the Congressional Lupus Caucus and Congressional Prevention Caucus, a group of healthcare reform leaders who attempt to inform Congress and the public about disease prevention and health promotion.

Moran has been adamant about improving healthcare since he started his career in politics as a member of the House Appropriations Committee, which oversees federal funding for programs that provide health services to the less fortunate in a community. He also serves as Ranking Member of the Interior Subcommittee, as well as a senior member on the Defense Subcommittee. Moran is also passionate about advocacy for mental illness by supporting efforts and legislation focused on implementing and funding mental health parity laws.

Moran graduated from The College of the Holy Cross, where he majored in economics. He continued his education at the University of Pittsburgh where he got his masters degree in Public Administration in 1970. His political career started nine years later when he was elected to the Alexandria City Council. Then in 1982, he became the vice-mayor and in 1985 he was elected mayor. When he ran for Congress for the first time, he was elected and joined the House of Representatives in 1990.

Learn more about CCFA’s advocacy initiatives at: http://www.ccfa.org/get-involved/be-an-advocate.

 

Asacol® No Longer Available in US
CCFA, in an effort to educate our constituents about the changes to Asacol® and the newly issued Delzicol™, has prepared the following information.  Please share this information with your healthcare provider.

As of April 1, 2013, the medication Asacol® is no longer being distributed in the United States.  Once the supplies currently in pharmacies are out of stock, the product will no longer be available.   While Asacol® is no longer being distributed in the United States, the manufacturer; Warner Chilcott has replaced it with a product called Delzicol™.    Several other mesalamines are commercially available which can also can be substituted for Asacol in the treatment of your Crohn’s diseases or ulcerative colitis.  You should contact your healthcare provider to discuss your specific medication needs.  You can also review our medication brochure for more information on mesalamines at http://www.ccfa.org/assets/pdfs/understanding-ibd-medication.pdf

 For more information about the discontinuation of Asacol®, please contact the Warner Chilcott medical information desk directly at 1-800-521-8813  ext. 3236. 

    

 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  and Pinterest, or join the CCFA Northeast Ohio Group on LinkedIn.

 

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     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.


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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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