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Thread: Crohn's Rides?

  1. #16
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    I'm the only one allowed to whine
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    We celiacs should jump on the IBD, UC, Crohn's bandwagon, too. A little higher in the digestive tract, but also autoimmune.

    I was very interested in the Guts ride last year, but quailed at the fundraising.

    Maybe I could volunteer to help with the ride.
    "If Americans want to live the American Dream, they should go to Denmark." - Richard Wilkinson

  2. #17
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    Quote Originally Posted by pyxichick View Post
    .

    Just my opinion. I've thought of doing the get your guts in gear ride, because it would be cool to meet other cyclists who have IBD, but I figure there are better places for my charity.

    In any case, I hope you find a way to support your family members with IBD. It's not something I would wish on anyone.

    cheers,
    Kate
    Kate- Where would you channel your funds? I honestly am interested not in drugs, but a cure. I have found a lot of information on how to help my husband through diet, but I also have found there is only a moderate success rate. My husband's doctor is fabulous, if he feels remicade is needed we will stick with it. Right now keeping my husband off the operating table, out of the hospital and out of pain is my number one priority.

    What I want is not to connect with others that have IBD, I don't have it. I want to find a way to channel my energy into something other than frustration. My dad is currently in remission from colon cancer, my husband just got diagnosed with Crohn's, I have a lot of anger I want to use positively. People should not have to deal with the pain these very important men in my life have dealt with.

    I am actually intrigued by doing something with my husband and donating the funds to a worthy cause. We just need to find something people will want to support. Maybe we could tour a self (family) supported tour and raise funds. I am still just brainstorming.
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  3. #18
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    Quote Originally Posted by pyxichick View Post
    I don't want to sound all cynical here, but I have a problem with CCFA. It's a creation of a drug company. Drug companies make lots of money off people like me who have UC and need to take drugs for the rest of our lives to treat our disease. I used to go on their website to do research and such until I realized that they devote nothing to any sorts of natural treatments or cures. It's all about the drugs.
    This is a problem with many self-declared patient interest groups -- they get sponsored (and co-opted) by drug companies and the research funding they generate gets directed into certain areas while other areas get neglected. For instance, most research on breast cancer goes into drug research or into research on causes we ourselves might be responsible for (diet, smoking, exercize, etc.) while there's very little research on environmental causes.

    But if we do a "virtual" charity ride, we could donate our funds anywhere we agreed on. So one way to spend that frustration energy now might be in looking up where promising research is happening. Where are people looking into causes of IBD? Where is there new basic research going on about the physiological processes of IBD? It was that latter kind of research that I recently read about that seems about to result in a new treatment for psoriasis (and possibly other auto-immune diseases down the line). Or what about research on "alternative" treatments? If you find something promising, maybe a lot of us Crohn'ies could be sold on the idea of a virtual ride to gather some extra funding for it.

    The immune suppressants (such as imuran or remicade) do help. Your dh should soon be in remission, and there are milder drugs than remicade that may keep him there, hopefully without overly burdensome "side" effects. ("Side" is in scare quotes because all effects are equally central from the point of view of your body's physiology.) But in the long run, we'd like to see more and better options on the table.
    Half-marathon over. Sabbatical year over. It's back to "sacking shirt and oat cakes" as they say here.

  4. #19
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    I did find that CCFA does receive money from Centocor, the people who developed Remicade. I am still not sure CCFA is the worst organization to back though. I did find some other people working on research in Crohn's. Off to ride, I will bookmark my search for the rainy day forecasted tomorrow!

    One group, Paratuberculosis Awareness & Research Association (PARA), is doing research on the correlation between Mycobacterium avium subspecies paratuberculosis (MAP) and crohn's.

    It appears Johns Hopkins has a large area devoted to research on digestive disorders, but seem to be focused on colon cancer more than Crohn's. They also have research focused on autoimmune disease.

    Cedars-Sinai Medical Center has a group dedicated to researching IBD.
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  5. #20
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    Mar 2006
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    Minneapolis, MN
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    Amanda,

    I'm not sure who I'd give money to. I sort of stopped doing a lot of research on the topic once my own drugs (6MP for about 10 years now) started keeping my symptoms at bay.

    But it's a great idea to do your own fundraiser. Crohn's and Colitis seem to be way more prevalent than one would think, once you start talking to people about it.

    I'd love to take part in some sort of ride where I knew the money would go toward finding a cure!

    I wish your DH good luck in dealing with his Crohn's. You're a great partner for wanting to do something positive in response to his diagnosis.

    Take care,
    Kate

  6. #21
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    Oct 2006
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    Aggieland
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    It may be a good idea to contact your alma matter--A&M--and see if they can help out. They already sponsor the Tri-County Hill Hopper Bicycle Ride which helps out an organization for children with special needs, but there may be another Aggie organization interested in creating another ride.

    P.S. I have IBS & get tested for Crohn's every year, so if you get something started, let me know.

  7. #22
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    Have you done the Hill Hopper in the past. We have rode it 2005 and 2006, it is my nemesis!! I cannot think of a harder 76 miles for me. We plan to try it again this year.

    I am trying to figure out the best time to organize anything. My DH and I were kicking around the idea of doing the Get Your Guts in Gear and seeing if the Capitol City A&M Club will assist in a fundraising effort. I am still thinking about something to do

    We were also members of Ol' Army Cycling for the MS150, I may see if they have any interest in creating a ride. Their primary focus is the MS150, but they might. I think one of the guys is already behind the Mayday Challenge. There is some good riding in College Station area, I could see there being room for another ride. Maybe next fall?
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  8. #23
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    I'd be willing to help, so let me know after you've given it more thought!

    I'm hoping to do the Hillhopper(with coworkers) & Houston MS150(with cousin & uncles) in 2007.......lofty goal with them being so close, but we shall see.

  9. #24
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    The Hillhopper has been the start of my MS150 training the last two years. I usually am a little wimpy about cycling in the cold and the Hillhopper reminds me to get it in gear. It is great way to convince yourself to train harder. I trained hard for the MS150 both years and didn't hurt nearly as bad as most people did Monday.

    The MS150 is the best ride out there. Don't skip the park- it is painful but so worth it. We decided to skip doing the MS150 this year, but I know we will miss it come April.
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  10. #25
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    Are you still doing the HillHopper?

  11. #26
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    We plan on it. This year I plan to ride in the winter and not let the ride kick my butt. It is so hilly, but none are really steep. It is just one roller after another. The first year was the only time I ever considering sagging on a ride. I will conquer those hills!
    Amanda

    2011 Specialized Epic Comp 29er | Specialized Phenom | "Marie Laveau"
    2007 Cannondale Synapse Carbon Road | Selle Italia Lady Gel Flow | "Miranda"


    You don't have to be great to get started, but you do have to get started to be great. -Lee J. Colan

  12. #27
    Join Date
    Jan 2005
    Location
    Vernon, British Columbia
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    Well, it looks like Canada has a ride/run/walk called the Wheel 'n Heel a Thon
    http://www.ccfc.ca/English/fundraising/hnwfacts.htm

    There was one in Kelowna last June, only a 30 minute drive away. I'll probably look into that one...

    Check out how it is done here and see if there's a way to do it this way in your area?

    Glad to have found others dealing with this disease, thanks for wanting to help!

    Hugs and butteflies,
    ~T~
    The butterflies are within you.

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  13. #28
    Join Date
    Feb 2007
    Location
    New England
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    GYGIG Ride

    I'm new here and fairly new to cycling. My husband and I just signed up for the NYC ride in June, and so far, we have had nothing but positive experiences with GYGIG.

    The organization supports about 5 different charities that support people with Crohn's and Colitis, not just the CCFA. The ostomy association is one of them. When writing the fundraising letter, we were told that it was incorrect to say that the ride supports drug research...it primarily supports the search for a cure as well as patients struggling with IBD. I believe there was a recent announcement for a study just completed at Yale that identified the genes involved in Crohn's/Colitis. CCFA was one of the sponsors, but not the only one.

    As to fundraising, it *is* daunting that we have to raise about $2000. That is why we decided that my husband would ride and I would help with the crew (crew members don't have to fundraise). We're really not sure how it's going to go. BUT -- you are not left to struggle on your own with that. If you join the ride, GYGIG gives you a fundraising newsletter with lots of ideas. There is also a yahoo forum where riders can share what worked or didn't work for them. Personally, we're going to put out an envelope in the lunchrooms of our workplaces, have little buttons on our blogs asking for support, and may ask local bike shops if we can hang up a flyer or two. I'll also bet there's a local Crohn's support group that you could meet with, who would be happy to help sponsor your ride or get the word out for you. Some of the patients are too sick to ride, or not interested in riding, but might help financially, since they are as interested in a cure as you are. And it would be great to meet others who are going through the same struggles that you and your husband are facing.

    Amanda, I hope you will give the Texas ride a try. This is our first ever charity ride, and we're nervous too, but I think it's going to be a great experience.

 

 

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