Crohn's Rides?

[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...

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 "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! 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

[Aggie_Ama]

Don't just stand...train! 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

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.