News to Digest from CCFA Southwest
January 2013
To join our newsletter mailing list please email the Southwest Chapter today
IN THIS ISSUE
Important Dates
Support Groups
Director’s Message
Patient Spotlight
Take Steps
Team Challenge
Camp Oasis
GI Buddy
IMPORTANT DATES
January 31--Take Steps Kick Off @ California Pizza Kitchen, Tempe Marketplace
February Team Challenge Information Meetings, Las Vegas & Phoenix
February 26—Team Challenge Kick Off—Las Vegas
February 27—Team Challenge Kick Off—Phoenix
March 23--Chuck a Puck in Las Vegas--Wranglers vs. Aces
March 23--Take Steps Kick Off @ Texas Station Bowling Center in Las Vegas
March 26—Educational Program in Phoenix
April 16—Understanding IBD, Educational Program in Las Vegas<
April 27—Take Steps Walk in Phoenix For more information or to register. Click here.
SUPPORT GROUPS 
Click for more information about support group times and places
- CCFA Support Group: Albuquerque, New Mexico
- CCFA Support Group: Glendale, Arizona
- CCFA Support Group: Las Vegas, Nevada
- CCFA Support Group: Mesa, Arizona
- CCFA Children and Parent Support Group: Mesa, Arizona
- CCFA Family Support Group: Phoenix, Arizona
- Online Support Group
CCFA also offers an Online Community where you can get the support you need in managing your condition 24/7. Participate in discussion boards, personal stories, submit questions and more. The Community also offers a live online support group program where you can connect with your peers over four weekly chat sessions that are guided by various IBD topics.
Learn more and register for an upcoming session of the online support group!
Director’s Message
CCFA Supporters:
I want to thank you for your continued support of the CCFA mission. I welcome you to the first edition of the Southwest Chapter e-Newsletter. As we begin 2013, there is a great deal of news to share from both our local chapter and the progress being made in finding a cure for Crohn’s disease and ulcerative colitis. I am very excited about where we are and where we are going on both of these fronts.
The mission of CCFA is to cure Crohn’s disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases. To all of us with IBD, or who have a loved one with IBD, a cure cannot come soon enough. We all know the struggles, both mentally and physically, that are fought on a daily basis. I want you to know that we are on the right path. With the financial support you have given to CCFA and the research projects CCFA has funded, we have learned more about IBD in the last 3 years than we learned in the previous 15!
One of the biggest challenges of IBD patients is to explain their disease to everyone. Let’s face it; Crohn’s and colitis are not fun diseases to talk about. Many people do not feel comfortable discussing their bathroom routines. CCFA recognizes this and has just launched the new campaign to “get the conversation started” and to help people understand what IBD’ers are going through. Escape the Stall is the name of the campaign. It shows images of people in bathroom stalls—from a bride, a child, a construction worker, and even Santa Claus! The message is simple: someone you know may have IBD.
As an IBD sufferer myself, I am so happy to see fellow sufferers overcome the bad times and accomplish amazing things. We all know about those bad days/months/years with these diseases, but for most, there is light at the end of the tunnel. In this first newsletter, we share with you the story of one incredible woman. Emily’s story is one of hope and inspiration. She is an example of how someone can go from an awful situation to one of great success. The biggest fear for many young patients, and especially their parents, is surgery. Emily’s story shows how surgery saved her life. She has not looked back.
I encourage everyone to get involved with CCFA. We need your continued support for the 1.4 million people with IBD. We need better treatments. We need better understanding about IBD within our communities. We need to feel better. WE NEED A CURE. Please consider a way to do what you can to help. Form a Take Steps walk team for Phoenix, Las Vegas, Albuquerque, or Tucson. Join Team Challenge and train to walk or run a half marathon with our Las Vegas or Arizona team. Volunteer at one of our events. Have a “Buck a Jeans” day at your office or school. Or simply make a donation. We need your help. Together we are getting closer to a cure.
Eric Stern
Executive Director- Southwest
602.734.1392
EStern@ccfa.org
Patient Spotlight
In the summer of 1995, when some of her classmates were receiving cars for high school graduation, Emily Clyde Curtis received a colectomy, the complete removal of her colon. When she woke from the surgery, she whispered in amazement, “I don’t feel sick anymore.”
Diagnosed with ulcerative colitis at fourteen, Emily suffered from typical UC symptoms of cramping and bleeding. But the disease flared in her senior year of high school, making being trapped in the testing center to take the SAT worrisome. Shortly after graduation she was hospitalized for several weeks. When the disease didn’t go into remission, Emily had the surgery that resulted in an ostomy. A few months later, surgeons formed a j-pouch from her small intestine and closed the ostomy. Emily triumphantly left for college a semester after her planned start.
Now Emily, a former hospital chaplain, is a wife and mother of three. In addition to countless hours spent volunteering, she teaches piano and edits a journal. Her experience with ulcerative colitis has left her with appreciation for kind, skilled doctors and nurses and sympathy for those who suffer from the disease. Despite her ordeal, Emily doesn’t feel particularly scarred by inflammatory bowel disease. She is grateful for her good health, and in 2012, she ran with Team Challenge at Napa. That same year, her husband, Nathaniel Curtis, ran with Team Challenge at Las Vegas.
Take Steps
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“Take Steps, Be Heard for Crohn's & Colitis” is CCFA’s
largest fundraising event. Take Steps Walks raise awareness for the
more than 1.4 million American adults and children affected by
inflammatory bowel diseases.
Walking Toward a Cure--Tempe, Arizona April 27, 2013
- Thursday, January 31--Kick Off for Phoenix Walk is at California Pizza Kitchen, Tempe Marketplace.
- Eat all day with our flyer!
- Sign up your team from 5-8pm.
- Saturday, April 27--Take Steps Walk will be at the Kiwanis Park in Tempe
- Registration for Walk starts at 4:00 pm
- Walk starts at 5:00 pm.
Click here-->To volunteer, sign up your team, or ask questions. Or contact Walk Manager Megan Livengood @ MLivengood@ccfa.org or 602 734-1392
Walking Toward a Cure--Las Vegas, Nevada May 18
- Saturday, March 23--Kick Off for Las Vegas Walk is at
Texas Station Bowling Center. You must have formed your walk team and raised
over $250 to attend this event. To RSVP, please email Caitlin Shea: Cshea@ccfa.org
- Saturday, May 18th--Take Steps Walk will be at the
Mountains Edge Exploration Park
- Registration
for Walk starts at 5:00 pm
Click here-->To volunteer, sign up your team, or ask questions. Or contact Community Development Manager Caitlin Shea @ Cshea@ccfa.org or call 646 306-4472
www.cctakesteps.org/lasvegas
At the Walks you and your Take Steps team will enjoy: Delicious snacks, fun children's
activities, live music, and exciting entertainment. Various booths will
provide information about sponsors and resources in this engaging,
worthwhile event.
The
funds you raise through Take Steps will help support patient programs,
enhance professional education efforts, and propel critical research for
cures. In the past four years of the Walk, we succeeded in bringing
together over 100,000 people and raised close to $32 million to help
further our mission.
Team Challenge
Team Challenge is the Crohn’s & Colitis Foundation’s endurance training and fundraising program. Through Team Challenge, you can run or walk 13.1 miles while helping to find a cure for Crohn’s disease and ulcerative colitis.
In 2013, Choose Your Challenge! With Team Challenge there’s a great destination race waiting just for you! From the vineyards of wine country to the beautiful urban backdrop of Chicago, what will your Challenge be?
See new Team Challenge Website!
Click here -->To sign up or ask questions In Arizona contact Stephen McGinnis, Southwest Engurance Manager SMcginnis@ccfa.org. In Nevada contact Deb Watson DWatson@ccfa.org.
CAMPUS CONNECTION
CCFA’s first interactive, college student focused website is live!
Students can log on, plot themselves on a map, post events on campus, find events on campus and more! There are great resources for students to use and share with others. Share this site with all college students with IBD, so they can connect with others around the country.
www.ccfa.org/campus-connection
IBD Specialists
There are some things that you’ll want to talk with a Crohn’s and colitis information specialist about.
Whether you’re looking for a specific resource, referrals to other organizations, or answers to questions you can’t find anywhere else, you can speak with helpful specialists at CCFA’s Information Resource Center Monday thru Friday, 9:00 am to 5:00 pm EST:
• Speak with a specialist by telephone at 888-MY-GUT-PAIN (888-694-8872)
• Connect with a specialist via email @ ccfa.org
• Chat live with a specialist
• Submit a Specialist Contact Form
CAMP OASIS
July 8-14, 2013
A Fun Place for Learning, Playing, and Healing
Dealing with inflammatory bowel disease (IBD) as a child is even more challenging. That is why the Crohn's & Colitis Foundation of America (CCFA) proudly established Camp Oasis over a decade ago. This co-ed residential camp program enriches the lives of children with Crohn's disease and ulcerative colitis by providing them with a safe and supportive camp community.
A Life Changing Experience
Since all of the campers (and many of the adults) at Camp Oasis are living with IBD, our supportive community allows them to:
• See that they are not alone
• Try all sorts of new sports and activities
• Create friendships with people who truly understand them
• Gain confidence and independence
• Put aside their troubles, and just be a kid
Registration opens soon; check the CCFA website
GI BUDDY
Keep Your IBD On Track with GI Buddy!
GI Buddy is CCFA's new online tracking tool. It helps you record important aspects of your inflammatory bowel disease (IBD) symptoms and creates views of your overall health to share with your healthcare team. It's easy to use and you can even track information on the go through our mobile app!
With GI Buddy, you can:
• Log your symptoms.
• Stay on top of your IBD treatment.
• Record the foods you eat.
• Monitor your overall well-being.
• Get your total health picture in customized reports.
Improve your IBD management and quality of life -- try the free GI Buddy tool today!
Get access to GI Buddy Interactive Tracker
Be Our Fan! Follow Us!
Help spread awareness while staying updated on what's happening at CCFA Southwest with social media sites.
http://www.facebook.com/CCFASouthwest
http://www.ccfa.org/chapters/southwest/
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