News to Digest, March 2012
IN THIS ISSUE:
- NEW Akron Support Group Coming Soon
- Take Steps Kick-Off Party April 22nd
- Tickets for VIVA! Cinco De Mayo on May 3rd Now on Sale
Chapter Director’s Note
DID YOU KNOW…………….
One of CCFA’s top three priority projects right now is the Pediatric Network Initiative. This study will enroll over 1,500 pediatric IBD patients at the time of their diagnosis, across 50 study centers nationwide. The goal of the study is to collect genetic, clinical, and immunological data at the time of diagnosis, continue to monitor these children over time, and eventually create a model that will aid clinicians in deciding which course(s) of treatment will be best for each newly diagnosed youth, minimizing their symptoms and risk of surgery.
This is the largest collaborative pediatric study ever, and our researchers are excited to see the outcomes. The Pediatric Network Initiative is a step in the right direction, not only for children with IBD, but for all IBD patents.
In 2011, CCFA funded $14.6 million in research. Since 1967, we have funded a total of $167 million. Since the inception of Team Challenge and Take Steps just 5 years ago, the amount of funding for research has increased substantially.
By participating in Take Steps and Team Challenge, YOU are making this research possible! We are grateful for your ongoing support.
Lesley Hoover, Chapter Director
Volunteer Spotlight: Tammy Gedetsis
Tammy (left in photo) Tammy is an alumn of 2011 Virginia Wine Country Half-Marathon with Team Challenge during which she surpassed her fundraising goal. Now she is back for the Virginia 2012 season not only as an honored hero, but a Mentor to support new participants in reaching their goals too. She is a tremendous support to the team through her positive, determined attitude and openness about her own challenges and triumphs.
Tammy was diagnosed with Crohn's 14 years ago. She has been married for 12 years to her husband Nick who is very supportive. She has two awesome kids, Katelyn (7) and Jarred (11) and a boxer puppy named Lucy.
“Having Crohn's has taught me not to sweat the small stuff in life, you have to treasure the good days because you don't know when the next flare might knock you on your butt.” Says Tammy, “I've become very good at packing for week-long stay in the hospital. I have an excellent support system that definitely has helped me through the bad times.”
One of these difficult times was in 2010, when Tammy was quarantined because she got a lung infection from her compromised immune system due her medication.
“My kids thought the masks were funny that I had to wear to go outside my room for tests,” remembers Tammy, “I even had to wear them home for a while when I went out to make sure I didn't get or give any germs to others.
Tammy has found that attitude is very important to stay strong while dealing with Crohn’s.
“Staying positive is very important when you have this disease because if you can't see the humor in things, it just makes things worse.”
As participants face the realties of training for a half marathon through flares, Tammy is always encouraging them that they can defy their disease by running or walking a half marathon to find cures as she did only 10 short months ago.
“If I let a flare keep me from completing the Virginia 11 half-marathon I would never complete a season.” Said Tammy, “Flares are part of my life and I’m not going to let one stop me from doing anything – especially completing an event that helps find cures!”
Intern Spotlight: Annie Bontempo
We are lucky at the Northeast Ohio Chapter to have the help of so many wonderful interns and volunteers. One of those people is our Development Intern, Annie Bontempo. Annie is currently a student at Cuyahoga Community College and will be enrolling in the Non-Profit Administration program at Cleveland State University in the Fall. Annie works in our office three days a week and has worked on everything from our education programs to Take Steps. When she is not manning her beloved paper slicer at the CCFA office, Annie enjoys exploring the world with her husband Joe, (who is conquering his Crohn’s disease), chatting with her customers at the Bonefish Grill and practicing yoga. We are truly lucky to have her in our office. Thank you Annie for everything you do for CCFA!
VIVA! Cinco de Mayo: NEW LOCATION, TICKETS ON SALE NOW!
New venue alert - VIVA! will now be held at the old Sammy’s space at Legacy Village above the Starbucks (just down Richmond Rd. from the original venue). On Thursday, May 3 from 7:00 – 10:00 p.m. 200 of Northeast Ohio’s philanthropists, up and comers, physicians, patients, and friends will gather for remarks from Dr. Jon Braun of UCLA (Immediate Past CCFA National Scientific Advisory Committee Chairman) gourmet food stations, wine tastings, signature tequila cocktail, live and silent auctions, and a Judith Ripka jewelry bar.
Tickets available now: click here
VIP Admission: $100 per person ($25 tax-deductible)
Regular Admission: $50 per person ($15 tax-deductible)
Thank you to our amazing event hosts: Cari and Eric Marderstein and the wonderful Honorary Committee they recruited (see full list at www.ccfa.org/chapters/neohio)
Ask the Experts Reaches a Record 129 Participants in Northeast Ohio
On March 3rd, our chapter hosted its annual Ask the Experts education program in Independence. This year, 129 people attended the program, which is a 45% increase over 2011! In addition, participants shared overwhelmingly positive feedback about the program.
Speakers addressed IBD research, surgery options, nutrition, pediatric transition and support, and patient perspectives. Attendees had opportunities to ask question of our experts and participate in an engaging conversations about managing IBD.
The Northeast Ohio Chapter is incredibly grateful to participants, speakers, and planners. Many volunteers also helped to make the program a huge success. We would especially like to thank the Cleveland Clinic and University Hospitals for lending expertise and for providing financial support to this program. Other financial supporters included Abbott, Janssen, and Shire.
We will be hosting several more education programs in 2012, including a treatment program in Akron and a nutrition program in greater Cleveland. Visit our website or watch our monthly newsletter for additional details as they become available.
Akron Support Group Coming Soon
We are pleased to announce that a new support group in the Akron area will be starting soon! The support group will begin in late spring/early summer. Visit our website or watch the newsletter for more details on the location, date, and time as this information becomes available.
The Northeast Ohio Chapter hosts two other support groups in the area:
- The west side support group meets at the Bay Village Public Library on the third Wednesday of each month (please note this group does NOT meet in June, July or August).
- The far east side group meets at Auburn Career Center in Concord on the third Tuesday of each month.
Support groups are available for people with Crohn's disease or ulcerative colitis, family members, friends, and caregivers. Our support groups offer information and support to those living with IBD. The support groups are facilitated through an amazing network of volunteers. If you are interested in forming a support group in your area, please contact Becky: firstname.lastname@example.org.
To see more information about our support groups, you can also visit our website: www.ccfa.org/chapters/neohio.
Take Steps Cleveland: Bowling Kick Off!
So far 67 of you have signed up to be Team Captains, and our Cleveland walk has the goal of 166! So we need some help getting new and alumni teams registered. It’s CRUNCH TIME BABY! Sign up today to be heard.
Let’s make it happen! It couldn’t be easier all you have to do is call or email me (Annemarie) to let me know that you want to reactivate or create a new team and I can do that for you. Call or email me: 216.524.7700 or email@example.com . Once I get your email, I’ll sign you up and shortly a user name and password will be sent to you so you can begin the fundraising fun.
We have awesome incentive prizes for everyone that signs up before the Cleveland Take Steps Kick-Off on Sunday, April 22nd at Parma Freeway Lanes (most of you should have received the invite). Everyone registered for the Cleveland walk will be in a drawing for a pair of ladies and men’s quartz watches. Remember to RSVP to the Kick-off By April 16th (firstname.lastname@example.org) so we can have enough food and lanes for the whole group.
Not sure how to get your fundraising started? Sell Monsters tickets for the last game of the season (April 14th at 7:30pm). Here’s how it works: you sell them for $22 and your team will be credited $12 for each ticket sold. If you are interested please contact me to get tickets to sell at your work, social events, sporting events, etc. This is an incredibly fun and easy way to fundraise! The team that sells the most tickets will be awarded the additional fundraising opportunity to man the “Chuck-a-Puck” booth at the game -that could earn your team an extra $500-1000!
Fundraising Tip of the Month:
The average walker raises $250 but here is an EASY way for you to raise $300 in just ONE Week!
- Day 1 Make your own contribution to your team - set the bar - $25
- Day 2 Ask 5 neighbors for $10 each - $50
- Day 3 Ask your boss to contribute $25 (email sent from your fundraising page is perfect for this!)
- Day 4 Ask 5 co-workers for $5 each – $25
- Day 5 Ask 3 family members for $25 each - $75
- Day 6 Ask 2 businesses that you frequent for $25 - $50
- Day 7 Ask 5 friends for $10 each - $50
But don’t stop there!
Strive to become a member of the Loud & Proud Club by raising $1,000. If you can complete each of the 7 steps above in a week think about what you can do in 11 weeks! And remember your CFFA Staff Partner Annemarie is always available to brainstorm new ideas or what to do it you hit a roadblock.
SAVE THE DATE: TAKE STEPS AKRON WALK – SATURDAY, OCTOBER 6TH
We are currently seeking committee members to help with team recruitment, team motivators, volunteer recruitment, in-kind donations, logistics and marketing. If you are interested please contact Annemarie. email@example.com
Team Challenge Visits Virginia Wine Country This Summer
We are nearing the half-way point of our Virginia 2012 Team Challenge season which means we have a half-way party celebrating our progress with Team Challenge alumni and the entire CCFA family this Saturday, March 31. It also means this is the time our team truly commits to crossing the finish line in Wine Country to help find cures for digestive diseases. If you know anyone on the current team, please reach out to them to thank them for their contribution of hard work and dedication. If you don’t, please post to our Facebook page, or come out to celebrate with us on Saturday! The details are are available on our web page: http://www.facebook.com/tcnortheastohio
Here are a few words from Becky Ballou, one of our honorees, part participants and mentors about what this season means to her:
I just wanted to take time to send a heart-felt thank you to each participant this Virginia 12 season! Through all the miles you run and injuries you may endure, just remember you are personally making a difference in the lives of so many people affected by these diseases.
As most of you know, I am one of your honored heroes this season. My struggle with Crohn's started at the age of 15. There were times I didn't want to get out of bed or go to school because of the questions and embarrassment associated with this disease. As the years went on, the symptoms became worse until finally in 2010 I had surgery to remove parts of my small and large intestine. This disease can be debilitating however, having such an amazing team that is personally striving to fundraise to find a cure is the strength I need to forge forward with my life!
Words cannot describe the sense of the power you give to IBD sufferers. You are an inspiration to all! Good luck to all of you on a strong and successful season! I hope to see most of you at the half way party!
YOU Can Help Save IBD Research Funding: Contact your Legislator Today
On behalf of the 1.4 million Americans diagnosed with Crohn’s and colitis, we are asking for your help. Contact your legislators to urge them to support full funding of the Centers for Disease Control and Prevention (CDC)’s IBD program for FY2013. The target funding for this program is $686,000. To ensure this program receives funding we must encourage Members of Congress to contact the appropriations committee.
It’s as easy as a couple clicks. Use the next 2 minutes wisely by clicking here to have your voice heard.
Its Time for Spring Cleaning, Are You Going to Consign for CCFA?
Planning to do some Spring cleaning? Put aside those pieces of gently used furniture, artwork, lamps, kitchen accessories, collectables, etc. that you’re not using anymore and call Seconds Story Consignment and Resale: (440) 845-3000.
One man’s junk is truly another’s treasure! Seconds City, located on Pearl Road in Parma Heights, is expert at identifying and consigning items that will be in demand. They will guide you through the process – designating CCFA as your charity of choice, deciding which of your items to consign, and coordinating pick up/delivery. Call Annie at Seconds City Consignment and Resale Home Furnishings: (440) 845-3000.
Thank you to everyone who’s already consigned to raise funds for CCFA!
‘Dinner in the Dark’ Raised approximately $3,000 to support CCFA!
Thank you to everyone who attended this sold out event to support CCFA and challenge your palettes with the Chef’s surprise creation! Established in fall 2010, ‘Dinner in the Dark’ brings together Cleveland’s Chefs and food lovers to share their passion and compassion. Once a month, they host a six course dinner created by six local chefs. The participating chefs and menu for the evening is not revealed until the guests arrive – keeping them ‘in the dark’. Each course is complemented by a carefully selected wine or artisan cocktail.
For December, they selected CCFA as the beneficiary of their dinner – thanks to the kind recommendation of the Sopko family. The nearly $3,000 raised will support mission-critical programs – educational workshops, support services, and fund cutting-edge research to find a cure. We are grateful to the Sopko family, Chefs: Brian Okin, Jeff Jarrett, and Ellis Cooley, Board President Elect Joe Prada for making remarks introducing attendees to CCFA, and last but not least, Fahrenheit for hosting!
To learn more about Dinner in the Dark’s upcoming events, visit: http://dinnerinthedark-fah.eventbrite.com.
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Lead Chapter Partner