Crohn's Rides?

[Aggie_Ama]

My DH was diagnosed Monday with Crohn's disease. Now I want to find a ride to channel my energy into. My father recently finished chemo for colon cancer, so the foundation for Crohn's would help that too.

The only thing I can find is the "Get Your Guts in Gear". Two problems- the only two rides are FAR away and you have to raise a lot of money. My goal is to raise a lot of money, but to get two people to raise $3700 combined is a tall task. Anyone know of other rides?

[Veronica]

Did you find dates for the rides for 2007?

V.

[Aggie_Ama]

Well I was thinking for 2007. I don't see the ride dates, but it is a long time to attempt to fund raise.

It is just something I am so passionate about. My Dad has colon cancer, my Pawpaw had colon cancer, DH has Crohn's, obviously I have a vested interest in the Crohn's and Colitis foundation. I want to find away to help but committing to $1850 a person is daunting. :eek:

[velogirl]

Get your Guts in Gear -- just cracks me up. I know, it's a serious disease, but what a funny (and almost disgusting) name.

If you can't find a fundraising ride, you could always do something on your own. Or, you could participate in a different organized ride, but have a fundraising campaign that benefits the Chron's Foundation and run it through one of the various fundraising sites. I know other athletes who've done that.

Good luck to you and my thoughts go out to your father as well!

[Veronica]

I'd never heard of the ride before. My sister has Crohn's and so the ride intrigued me.

2007 is kind of full for me, but the idea is percolating.

V.

[tygab]

Well I was thinking for 2007. I don't see the ride dates, but it is a long time to attempt to fund raise.

It is just something I am so passionate about. My Dad has colon cancer, my Pawpaw had colon cancer, DH has Crohn's, obviously I have a vested interest in the Crohn's and Colitis foundation. I want to find away to help but committing to $1850 a person is daunting. :eek:

You can do it. This amount is more than some charity rides, less than others. It does seem daunting at first, but just let everyone you can think of know that you're doing it and why, and explain that any amount will help. You will be surprised by the generosity of some. Plus, completing the fundraising is part of the challenge, so think of how much it will mean to finish both goals. You should plan things you can do to raise money, like - can you provide a service where proceeds will go to the ride, or organize a donated goods sale, or a raffle (my husband did this for the PMC). Ask family, friends, any groups you belong to etc. My husband and I had to raise $5000 for our ride, and we were first timers...

I say commit to it and make it happen! As for it being far away, that may be more of an obstacle, but I'd bet there are plenty of riders who come from other areas. I know the PMC draws from something like 38 states.

[Trek420]

Aggie_A,

It's very do-able. (((hugs))) to DH. My sister and my neice both have Crohns and both ride. Thanks for doing this.

[Aggie_Ama]

Well now the gears are turning. The Seattle ride would give me a long time to prepare both in fundraising and the trip. ;)

The other thing I am wondering is how one begins an organized ride? Do you contact the LBS? The local cycling club? It just seems like everywhere I turn I meet someone who knows someone with Crohn's, why not have a ride in the Southwest? I am not sure this is something I would be ready to take on, but it seems like something to put my heart into.

I am going to keep researching ways to pedal and raise money for CCFA. Right now DH is beginning Remicade, but I don't want to have him on it forever. There must be a way to find a cure. It is a pretty hard diagnosis to take, so I am channeling my frustration elsewhere.

[Duck on Wheels]

Yep, my daughter and I both have Crohns and both ride. Ride, hike, swim, ski, work more than we oughta. I'm not in all that great shape, but I'm still pretty active. And DD is training for the California Aids Ride 2007! Two words of encouragement for a new Crohn-ie:
1) Not that I'm a Mormon (far from it!) but according to one historic Mormon elder "The secret of a long life, is to get yourself an incurable disease ... and take care of it." Now THAT I do believe.
2) I just read in a local science magazine that somebody at my university has come up with a new mechanism for stopping auto-immune diseases (Crohns falls into that category). So far they've done the mouse tests on this for one skin disease, because then they could apply it as a cream. The mouse tests were successful, but there are still some years of human testing to do before it can go on the market. And for Crohns they have to find a different way of delivering the medication to the affected areas. So we'll still have to be patient, but at least there are new approaches under development.

Which I guess brings us back to your goal: Yes, there seems to be good reasons to do fund-raising for Crohns. There is research out there to support, and support group work to support while we wait for the research results. I wasn't aware that there were Crohns rides anywhere. Glad you found some. Perhaps others could be organized (talk to local bike clubs? bike shops?). I also wasn't aware that one could self-declare fund-raising goals for other, non-charity rides. Hmmm. Maybe we Crohn'ies on TE could find a weekend when there are rides here and there and overlay those with a virtual charity ride for Crohns ...?

As for raising the funds, there are several threads on that hereabouts. My DD has started her fund-raising for ALC. She's got letters printed up to send to friends and relations. She's made cards to insert into bags of cookies she plans to sell at her own and her BF's universities (took some calculating to work out what to charge for the cookies, but I guess she's got that done too). And I gather her BF wrote a piece for the local paper. Sister Trek420 also gets some sponsorship from the firm she works for. They contribute money and I vaguely recall that Trek proposed they make team jerseys the company's riders could all wear one day of the ride. That could be quite a PR show for the company if they all rode out as a group, for instance. I'm sure you'll find other tips in threads in this theme area.

[Trek420]

Duck on Wheels sorry to say that this is not true "Sister Trek420 also gets some sponsorship from the firm she works for."

No shirts, jerseys, water bottles, no company match....now if I was a golf tournament or was a football team or bowl game...:mad:

The grand high mucky muck poobah of Residential Service for Big Mega Telco was one of my sponsors on my last AIDS ride.

She made noises about team jerseys. But we're too po' to afford them at BMT corporation. We bought Bell South....but can't afford jerseys. I told her there will be publicity, we ride through tiny rural towns in CA where this is one of the biggest events of the year we should have...

Was she ever :( there was a 7-day made for TV movie filmed of the ride, our competitions team had jerseys....

I came back and said :p "for a few $35.00 jerseys you could have had 7 days of advertising in the youth market, our competition did!"

oops.

However....many companies match their employees charitable donations (not mine ahem). These funds usually take a long time to post but if someone's sponsoring you ask them.

[Aggie_Ama]

My husband has a pretty good attitude "You just play with the hand you are dealt." He went in for his first Remicade therapy yesterday and was a little frustrated about the treatment, but optimistic.

A virtual ride? That is a great idea! I think I found Betagirl raised her own money for Crohn's in 2005, maybe she can share what she did. This would allow up to raise money without the stress of hitting $1900.

I found there is going to be a "Get Your Guts in Gear" in Texas, March 23-25, 2007. They require $1900, which I would love to believe I will hit but it is a tall order. I need to think this one over for a while.

I loved Toni's idea of standing at the local university in her bike clothes. It is just so catchy.

[Trek420]

Don't just stand...train! :p Might as well, you have to train anyway.

There's a group of ALC riders who set up a fund raiser on a rainy day in SF indoors on their stationary trainers:p

[Aggie_Ama]

Don't just stand...train! :p Might as well, you have to train anyway.

There's a group of ALC riders who set up a fund raiser on a rainy day in SF indoors on their stationary trainers:p

Every year the University of Texas does this before their 4,000 mile ride for Cancer. It might not work in Austin. I have never seen it done in the town I went to school at, maybe I could try there? My wheels are definitely spinning, which is better than my head. It has been spinning since DH started getting sick 8/25. This is much more productive.

[uk elephant]

As Mother Duck (Duck on Wheels) and Auntie Trek (Trek420) said, I have chron's and I'm riding. I was worried about making the $2500 target for ALC too and almost didn't sign up. But then I decided to do it anyway. I started sending out letters to people this week (so no response yet...) and I started my cookie sales this week. I brought them in to my work yesterday and to BF's department today and so far I've made $25 profit. Not much in the big scheme of things, but it's a good start and I plan on doing this every week so it should help.

So my recommendation is to find a ride that you can make it to date-wise and sign up. I'm certain you won't have too much trouble getting the donations in.

[pyxichick]

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.

I just wonder whether they're really trying to find a "cure" or whether they'd rather we rely on their products for the rest of our lives.

On the other hand, my sister, who has Crohn's, did a fundraising thing for them so she could go skydiving, and she said it was one of the best experiences of her life. So I guess if you're doing it as something for yourself, then go for it.

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;)

[KnottedYet]

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.

[Aggie_Ama]

.

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.

[Duck on Wheels]

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.

[Aggie_Ama]

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), (http://www.crohns.org/index.htm)is doing research on the correlation between Mycobacterium avium subspecies paratuberculosis (MAP) and crohn's.

It appears Johns Hopkins (http://www.hopkins-gi.org/) 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 (http://autoimmune.pathology.jhmi.edu/).

Cedars-Sinai Medical Center (http://www.csmc.edu/2653.html) has a group dedicated to researching IBD.

[pyxichick]

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

[paigette]

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.

[Aggie_Ama]

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. :o 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?

[paigette]

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.

[Aggie_Ama]

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.

[paigette]

Are you still doing the HillHopper?

[Aggie_Ama]

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! :D

[LBTC]

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~

[CycleSeashore]

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. :)