My little Honorees!

In the process of getting signed up to support CCFA and run this half marathon in December, my girls were asked to be Team Honorees for the Rocky Mountain division of the CCFA!

You can see their link here!

Because of this, I get the distinct honor of attending all of the Team Challenge recruitment meetings and telling their story!  Public speaking is totally not my strong point, but its amazing when you are living the story every day how easy it is to tell.  Having the girls in front of all the folks who attend the meetings is huge too, because for those runners who don't have a connection to Crohn's or Colitis, it gives them a visual that they can work with.

We're using this ugly disease and turning it into something productive and good!

GIVEAWAY!!!

There's a pretty amazing giveaway going on over at my blog 

at crooksclan.com!

You won't want to miss it, so go! Go now!!!

You have until August 24th to enter!!!

Our First Fundraiser!

Colby and I decided what better way to raise money for our cause than to provide 3 hours of childcare!  For our local friends, here is the scoop:

WHAT:  Kids movie/game night.  Popcorn included!

WHERE:  Meyer house

WHEN:  Saturday, Sept 15th, 6pm-9pm

WHY:  Drop your kids off at our house for 3 hours of movie time, popcorn and games. Cost is $10 per child, 100% of funds will be donated to the Crohn's and Colitis Foundation to support the half marathon I will be running in December! Depending on interest in this, we may do an additional date in October.

RSVP:  via Facebook invite or email to mcmcolospgs@gmail.com

Remicade

 

Choosing Emily's treatment path was not the easiest decision, yet we weren't left with any other options.  Emily's Crohn's has not been responsive to most of the drugs we've tried so far, and Remicade was really the only choice we had to go with. The positives outweighed the negatives, once we did our research, and we are praying that this one will finally get this disease under control.

Chemotherapy treatment began on Monday, July 30th for this sweet girl.  We showed up at the Hematology/Oncology unit at the Children's Hospital, selected our infusion block, and began a horrifying 7 hours of our lives.  It took 3 nurses 6 TIMES to get an IV into this child.  In the process, they blew 5 veins (which means they punctured the vein on both sides of the wall, causing the vein to collapse).  The 6th one thankfully took, but we had already been at the hospital for 5 hours at this point.  Through all of this, Emily had an unbelievably positive outlook, and a smile on her face.  I don't know how.  I certainly didn't!

Emily's next infusion is set for Monday, August 13th and I am prayerful that things will go smoother this time.

It's amazing to me how just over a year ago, we were reeling from discovering that both our kids had celiac disease, and wondering how in the world we were going to make that work.  And this year, having discovered that both girls also have Crohn's makes the celiac seem like such a non-event.  What I would give to have my biggest worry be how I was going to make pancakes gluten free!

I believe God gives every one of us a reason to be here.  Some of us go into highly specialized fields.  Some of us find our calling by staying home with our children and educating them ourselves.  In either case, we are all called to do something.  I believe my calling is to raise awareness and at times, money to help find a cure for my kids.  Crohn's is a horrible disease, and my children are only 5 & 6 years old.  The thought of them going through life like this just makes my heart hurt.

We are so blessed to have a circle of friends as well as family who understand what we are going through and support us every step of the way.  Without that, I'm not sure how we would survive this.

we've come a long way....

We've hit the $2,000 mark, just in 1 week!!! That's amazing!!!

If you have donated, we just want to THANK YOU again for your support and generosity! It truly does make a difference in finding a cure for this debilitating disease. It's easy to question if the $5,800 raised by November can actually make a difference, but if you multiply that by the 1000s that will be running this race, that's a LOT of money! It not only goes to projects like Camp Oasis, but so much more!

I was actually curious to see how much of a difference we really are making in finding a cure or new medicines to treat Crohn's & Colitis, so I went to the CCFA website and found some VERY encouraging news!  Granted, for the average, Non-Crohn's patient, this might seem like medical jargon to you, but I still encourage you to read it and share in the hope that there is work being done and we've come a long way in the last 40 years and continue to make a huge strides in treatment, leading us to a cure!!!

I've highlighted (underlined) some of the key facts that stand out to me as significant advances, even since I was diagnosed at the age of 12 - which was 22 1/2 years ago :)

Information credit: CCFA.org 

For more than forty years, research supported by CCFA has contributed to the growing body of knowledge and understanding

of Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD).

Today, both CCFA and the National Institutes of Health (NIH) actively support research in the field, and there are 

approximately 80 new therapies in the pipeline. Below are examples of recent successful research initiatives, studies, 

clinical trials, and other efforts supported by CCFA that have resulted in new advances in the field.

For a more comprehensive list of research news, visit the News Archive.

Basic Research

CCFA research has contributed significantly to the current hypothesis of the cause of IBD:

• That yet-unidentified environmental agents (such as bacteria) trigger an abnormal immune response in people who carry genes that make them susceptible to Crohn's or colitis.
• That the interplay of genetics, environment, and the immune system accounts for the initiation and perpetuation of the disease.

CCFA research funding has supported:

• Early Research on TNF-alpha, which contributed to the development of infliximab

• Discovery of the first gene for Crohn's disease, NOD2

• Development of animal models of IBD—vital resources that have greatly accelerated the pace of research
• Understanding and investigation of microbial antigens, bacteria that normally occur in the intestine and that are involved in the body's immune response
• Understanding the function of epithelial barrier cells, which are key to understanding intestinal inflammation

• Understanding and stopping inflammation.

• Early career training for many of the investigators involved in discovery of the IL-23 gene's role in IBD

Clinical Research

CCFA has sponsored comparative drug trials to find new uses for existing therapies—

to enhance the effectiveness of these medications or to minimize harmful side effects:

• Azathioprine in both Crohn's and ulcerative colitis
• Azathioprine and prednisone vs. prednisone alone
• Effectiveness of methotrexate
• Methotrexate vs. 6-MP
• 6-MP vs. 5-ASA.
• Efficacy of infliximab in combination with methotrexate for Crohn's disease - study is ongoing

Key Outcomes in Surgery

• New surgical technique: improving ileoanal pouch surgery by sparing the anal transition zone. In people who have undergone colectomy, this operation eliminates the need to wear an external pouch in order to eliminate body wastes.
• Understanding the psychological impact of ostomy surgery.

CCFA Contributions to Cancer Research

• Standard Classification for Dysplasia in IBD—landmark paper that helps physicians evaluate pre-cancerous changes in cells and determine course of action for their patients. 
• Studies of markers of cancer risk in chronic ulcerative colitis.

CCFA Contributions to Pediatric Research

• Prednisone absorption in childhood IBD
• Interventions for bone mineral deficits in children
• Value of serological markers in pediatric IBD
• Alternate-day dosing of prednisone in children
• 6-MP and corticosteroids in newly diagnosed children.

CCFA's Research Investment Portfolio Also Includes:

• Targeting specific "hot areas" for Requests for Applications from researchers

• Identification of the microbial antigens that activate immune responses in the intestine.
• Biomarkers of colon cancer in IBD
• Growth/Bone development - discover how inflammation causes growth failure and bone disease in children with IBD
• Surrogate Markers - RFA Submissions deadline July 1, 2007

• Funding government studies CCFA deems essential to IBD

• CDC/Kaiser Permanente Epidemiology Project, which will help determine how many Americans have IBD and identify differences in treatment patterns

• Building resources that benefit the entire scientific community

• Clinical Research Alliance, a national network of medical centers that participate in clinical trials
• DNA and Cell Line Bank, an important resource for geneticists who are studying IBD