Your child is in remission but they know it probably won't last long.

[David]

I recently received a fundraising email from the CCFA which talked about 14 year old, "Jacob". The image below was part of that fundraising email.

Something about it struck me as... wrong. But I'm not a parent so thought I'd get the feelings from parents regarding it as I could very well just be over-sensitive.

Any opinions?

 

[Tesscorm]

Sorry, maybe I'm a bit dense :redface: but what do you think is wrong about it?

They're obviously trying to get sympathy to generate donations... maybe I have no shame but, if those donations get us closer to greater understanding and better treatments, I'm good with using the sympathy card.

 

[David]

I guess if I was a pediatric GI I would look the kid in the eyes and tell them, "You're in remission and we're going to do everything we can to keep you there as long as possible." rather than, "You're in remission but it probably won't last long."

I realize that a positive outlook does not keep Crohn's in remission and maybe my head is just in the clouds. I guess my heart aches for a kid who goes around thinking his remission isn't going to last long.

 

[Jennifer]

To me kids aren't stupid and its important to have both truth and still stay positive. I feel that the quote is more truth than being positive but I think its important for that organization to be more about facts and truth rather than tons of mental support (that's what crohnsforum.com is for ). I feel that there's a silent positive message after it says, "but he knows it probably won't last long." After that it feels like its silently saying, "So we're doing everything we can to make sure he gets the treatment he needs," and then goes onto talking about understanding treatments and making donations.

My GI when I was a kid was always very honest with me and the appointments were always positive (probably because I was always screwing around during the appointments) even if I was being put on new meds or being told I was going to have surgery.

I know I'm not a parent or a kid anymore but I still have a child's perspective from growing up with Crohn's.

Edit: I also feel that the quote is aimed more at parents than the kids. I feel like its asking parents to please continue treatment rather than stopping meds and going back to an old diet once the child is in remission. Plus the adults are needed to make donations anyway.

 

[Tesscorm]

Oh, I totally agree with you! If Stephen's GI told him to expect a remission to not last very long, I'd be totally pissed and looking for a GI with higher expectations! And, my head's in the same cloud... a positive outlook may not 'cure' crohns but giving in to defeat would definitely not help!

But, from your post, I thought this was just the message in an email looking for donations... if this is the case, then I do think you need to pull the heartstrings a bit to get the donations.

 

[Clash]

I'm only seeing the image you posted but what does the ped GI have to do with this image? C's GI is very upbeat but C seems very aware that remission is elusive at times and hard to maintain at others. It has nothing to do with his GI or anyone else and more to do with how CD has affected him so far.

 

[David]

It has nothing to do with his GI or anyone else and more to do with how CD has affected him so far.

I think that hits the nail on the head and is the perspective I was missing. Thank you

 

[DustyKat]

Clash is right David, it has nothing to do with what has been said to him by a GI but rather the knowledge we all have that it is an incurable disease characterised by flares and remissions.

It is about a boy and his journey with Crohn's. CCFA has chosen to put a downbeat slant on the image and I imagine that it is in an effort to elicit sympathy. Why do I say that? Because this is what Jacob said...

But he knows there’s a good chance it won’t last. “This medicine isn’t going to work forever… ," he said.

Vast difference between won't last and won't last long.

Dusty. xxx

 

[crohnsinct]

Hmmm... I am a very positive person and so is my daughter's GI and so is O...she thinks she is going to graduate colege (in 8 years still on Remicade and still in remission. Reading that statement struck fear in my heart. Won't last long? Who says? What's long? Long is a relative term. I don't like downbeat marketing. I rather focus on the positives...like look where we are and what's in the works...how we have advanced..help us get to the next step...but maybe that doesn't get people to open their wallets.

I guess I would have to read the entire piece in context and will go do that (if I got the email) but I am with you David, if that is the cover then it doesn't sit with me well.

 

[Jmrogers4]

Yes I don't know that I would want Jack taking that to heart. He is in remission now and while we are realistic that it is not going to last his whole life we can sure hope for it. So for now we we will take the medicine, eat a good diet, stay active and positive and do our darndest to keep him in remission.
As a parent of an IBDer I at first read it is pretty negative but if you are trying to get donations from someone who doesn't know about it, it certainly does play on your sympathy but will I make my annual donation to CCFA - yes. Anything to find better/longer lasting medicines, a step closer to a cure.

 

[Mehita]

I'm with David on this one. I've yet to be a fan of any of CCFA's ads. Why not "Jacob is in remission - help us make it last as long as possible"? Something a little less depressing.

I think the ad of the poor woman sitting in the stall in her wedding dress, presumably missing her own wedding, is the worst. I think the focus should be on all the things people with IBD CAN do with the help of new medical discoveries, not everything they're missing out on.

Their ads just rub me the wrong way.

 

[my little penguin]

Yeah that^^^
most ccfa "Ads" are not geared towards anyone who has ibd let alone parents of a child with IBD. They are more towards someone who may donate who may kinda know someone with crohn's but doesn't live it.
I just delete them since they usually make me:ymad:

definitely not thrilled by the latest one -
OUR gi is positive with DS as well - but he has never used the word remission at all so.....

 

[Clash]

I googled the ad using the keywords jacob, won't last long and ccfa, the first link was a story about a snowboarder with CD. This kid does say, as Dusty mentioned, "...the medicine won't last forever..." I feel that is an accurate statement.

Even though we remain positive and don't sit around and wait for flares or bemoan the cards we've been dealt I think since CD is cyclical then it is realistic to be aware that there will be remissions and flares.

In relation to the ad, I think there are so many organizations trying to raise money for research for illnesses that the "downbeat slant" is a marketing tool that has been proven effective. It is a competitive market and marketing stategists are going to go with what will open your wallet for their organization.

 

[Tesscorm]

I think it is all about the strategy as well. I believe it was said above that unless you or someone you know has IBD, you probably won't understand the impact it can have on someone's life - I know I didn't realize how much IBD can affect someone until Stephen was diagnosed.

If you see a positive message, whether it be an IBDer enjoying life or a statement of how much we've learned, many might be inclined to think 'oh, it's not so bad... that person looks so good! I'll donate my money to a more worthy cause where people are suffering so much more!'

Educating people takes a long time... and to raise money in the meantime, I think you've got to work with the situation you have... in this case, raise awareness of the problems (relapses) and create sympathy for the need for more research.

 

[Amy2]

Before my daughter was diagnosed with Crohn's, I'd never heard of IBD. They need to make people cry with their ads, so they want to help!

 

[my little penguin]

Similar "stories" are used to raise money for other things (including food allergies, etc..)
ask me how I "know" - necessary evil - don't read those either.....but necessary

 

[Maree.]

I'm not sure that it works, I think because so many causes use the emotional grabs for sympathy that we get numbed to these messages.

If I saw this link text I don't think I'd read the article (which was actually positive and upbeat) and without reading the article the link text alone certainly wouldn't encourage me to donate unless I already intended to.

 

[Dexky]

Educating people takes a long time... and to raise money in the meantime, I think you've got to work with the situation you have... in this case, raise awareness of the problems (relapses) and create sympathy for the need for more research.

Bingo!! Those dealing with IBD and parents and loved ones of them are not the target market here. Seeing the firefighter and the bride on the toilet is an attention-getter. I can't say I'd never heard of CD or UC, (I work with a guy who's had a colostomy bag for 20 years), but none of it really hit home until EJ! We've all bemoaned the need to raise awareness. It's a marketing scheme! If it's working, they'll keep at it and more power to them. If not, they'll redirect soon enough.

 

[Johnnysmom]

I think the goal of raising money is for those kids who are unable to attain remission for long. Those kids need the research, the dollars, and the new drugs. In kids, it is a much larger population than adults and if you think in terms of that specific population the statement is unfortunately very true. I also believe that we are very close to a better understanding of this disease and better treatments too and CCFA knows that.