Visit the Microscopic Colitis Foundation Website
This summer, I will be walking in the Take Steps for Crohn?s & Colitis Walk. Take Steps is CCFA?s national evening walk and celebration and the nation?s largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn?s disease and ulcerative colitis. Over 1.4 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings together this community in a fun and energetic atmosphere, encouraging them to make noise and be heard.
Why do we walk?
One in every 200 Americans suffer daily with Crohn’s disease or ulcerative colitis. Throughout the year, Take Steps enables patient families to join together with their local community to build visibility and awareness about these digestive diseases while raising critical funds. Participants will enjoy a casual 2-3 mile stroll in a festival-like environment with food, music and fun! Our patients often suffer in silence -- Take Steps participants are encouraged to make noise and be heard.
Your donation will help support local patient programs, as well as important research projects. This cause is very important to me and I appreciate your help as we fight for a cure! In addition to donating, you can join me at the event. There will be food, music and kid?s activities. The more money we raise, the closer we will be to making life more manageable for patients who live with these diseases every day.
Please join me or donate to my efforts to support CCFA in finding a cure!
I'm Olivia, I am a 21yr old Marine with lymphocytic colitis. Please help and be apart of this wonderful thing to find a cure for all Colitis sufferers!
Walk Date and Time:
May 22, 2010
5:00 PM
Walk Location:
NTC Park
http://online.ccfa.org/site/TR/Walk/Cha ... fr_id=1751
Take STeps!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
Hi Olivia,
It's good to see you posting again. There is no question that CCFA is a good cause, (for Crohn's and ulcerative colitis victims), but be aware that at last report, they do not contribute one penny to research that might directly benefit anyone with microscopic colitis. In fact, their official position gives the impression that they feel that the disease is not worthy of their financial support. When one of our members corresponded with them, about that issue, they even denied that MC was a legitimate inflammatory bowel disease, until they were confronted with indisputable evidence. They don't seem to consider the symptoms to be severe enough, nor our numbers to be large enough, to be worthy of their support, so they appear to pretty much prefer to just ignore us.
Tex
It's good to see you posting again. There is no question that CCFA is a good cause, (for Crohn's and ulcerative colitis victims), but be aware that at last report, they do not contribute one penny to research that might directly benefit anyone with microscopic colitis. In fact, their official position gives the impression that they feel that the disease is not worthy of their financial support. When one of our members corresponded with them, about that issue, they even denied that MC was a legitimate inflammatory bowel disease, until they were confronted with indisputable evidence. They don't seem to consider the symptoms to be severe enough, nor our numbers to be large enough, to be worthy of their support, so they appear to pretty much prefer to just ignore us.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
even so
Even if that is so Tex, this whole thing is about Being Heard and taking the steps! That is why i named my team the way i did. The only way [people are going to be AWARE AND ACCEPTING of us is if we stand up together. That is why I am doing this race. I am doing it for us. They will see our team shirts and see us walk. They will see the money raised for us. I will have a booth that night with info on MC. There are so many types of Colitis the only way is to speak up for our selves. Every disease started somewhere once apon a time there wasnt many people with UC but enough people spoke up about it. WE have to do the same thing. We have to try to make a difference.
I hear you, and I support what you're doing, as, I'm sure, all members here do. The problem with most big organizations, such as CCFA, is that their officers tend to operate with a political agenda - that is, they put their money where it will do the most good to help bring in more contributions, not necessarily where it will do the most good from a research standpoint.
Of course, MC receives some collateral benefits from Crohn's and UC research, since there are no medications labeled for treating MC - they're all labeled for treating Crohn's or UC. That's a bittersweet benefit, though, since drugs are not the best choice for treating the disease, anyway, and with the big drug companies calling the shots on most research projects, it's pointless to assume that a "cure" will ever be found that way.
CCFA was originally formed in 1967, 43 years ago. Collagenous colitis was first described in 1976, 34 years ago, and microscopic colitis/lymphocytic colitis was described in 1980, 30 years ago. If CCFA has seen no good reason to recognize/support MC for over 30 years, I doubt that they will be likely to make any drastic changes in their attitude anytime soon.
I agree with you, though, that helping to raise public awareness of MC is a good thing, I'm just not sure that CCFA constitutes a productive venue for accomplishing that goal.
Tex
Of course, MC receives some collateral benefits from Crohn's and UC research, since there are no medications labeled for treating MC - they're all labeled for treating Crohn's or UC. That's a bittersweet benefit, though, since drugs are not the best choice for treating the disease, anyway, and with the big drug companies calling the shots on most research projects, it's pointless to assume that a "cure" will ever be found that way.
CCFA was originally formed in 1967, 43 years ago. Collagenous colitis was first described in 1976, 34 years ago, and microscopic colitis/lymphocytic colitis was described in 1980, 30 years ago. If CCFA has seen no good reason to recognize/support MC for over 30 years, I doubt that they will be likely to make any drastic changes in their attitude anytime soon.
I agree with you, though, that helping to raise public awareness of MC is a good thing, I'm just not sure that CCFA constitutes a productive venue for accomplishing that goal.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I really hope that the visibility and action you are taking should start to change some minds at CCFA.-
Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
lol
Thats right! Especially when I won't be the only Marine on my Team! lol I'll take pics for ya'll so you can see the shirts we are gonna wear