News to Digest, June 2013
|IN THIS ISSUE:
Steps Cleveland Raises $141,000, 92% to Goal
Spotlight: Sean Novak
- Free Webcast: Managing the Cost of IBD Care
Education Seminar on Treatments
Education Seminar on Nutrition
No Longer Available
Chapter Director's Note
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.
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
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
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.
Web: http://www.ccfa.org/chapters/neohio Email: firstname.lastname@example.org Phone: 216-524-7700 ext. 2
Free Webcast: Managing the Costs of
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
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
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!
$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
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
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!
support of CCFA is critical and we truly value all that you do. We look forward
to seeing you at future events and programs.
Thank You to our Generous Take Steps Cleveland Sponsors
Lead Chapter Partner
Want to make a donation to help Cleveland Take Steps get to 100%???
Contact Caitlin Randall at email@example.com or 216.524.7700 ext. 3
Take Steps Akron
Registration for Take Steps Akron 2013 is NOW
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
Admission options range from Dinner & Cocktails Only tickets to the entire day of activities.
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: firstname.lastname@example.org
Visit http://online.ccfa.org/golf26 for details, pricing, & tax-deductibility. This event would not be possible without the following sponsors.
Lead Chapter Sponsor
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
Remember CCFA for all your auto needs this summer!
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 email@example.com
to learn more about Power of Two!
The Crohn’s & Colitis Foundation of America’s Day on the Hill Goes
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
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:
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
$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
$50 MILLLION FOR THE DOD
PEER-REVIEWED MEDICAL RESEARCH PROGRAM AND INCLUSION OF IBD AS AN ELIGIBLE
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
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Lead Chapter Partner