I need to vent

[Julie YW]

Hi All,

I need to vent about something that might or might not be very popular. This forum has always felt safer as a place to vent, partly because of the anonymity and also because I think people who come here are more honest and real about the disease.

I started a research fund with the Chris4Life Colon Cancer Foundation and we had our first fundraiser nearly 2 weeks ago. It was hosted by my employer (former I suppose since I haven't worked since my diagnosis). After that evening, we've raised nearly $140,000. I decided to fundraise because I felt like I had the connections. And I understand that many people don't or don't have the gall to ask for money.

My fury is at those who do nothing in the name of colon cancer. I'm on Colontown a lot because I'm on Facebook and it just pops up on my feed. It always astounds me how when someone posts something about some bad news and the respondents always say something like, be positive, there's always hope and medical science is always advancing. I just sit there and fume! These people who I've called on to do something to help the cause do nothing and somehow expect that a new drug will pop up. Do people think that the treatments (which are very limited by the way) that exist came out of nowhere, that doctors and researchers just are magically able to do what they do. Every time I sit in that chemo chair, I think about the children who died so that we could have the chemotherapy we have today. I think about the first advocates who campaigned and fundraised. The U.S. government spends $600 millions on breast cancer research a year and only $200 million on colorectal cancer research. Why? Because the government only funds Stage II or III research. There's not enough money in the private sector to fund the Phase I research. The Susan G. Kroman Foundation raises $180 millions a year! So, that's why breast cancer treatments are so plentiful by comparison.

I wish people would just wake up and realize that everyone can make a difference, that every person's individual war is part of a global war. I just HATE the sense of complacency, the sense of entitlement, the sense of apathy that is everywhere. I know this isn't unique to colorectal cancer and exists in many spheres, but for God's sake when you're the one that is living with this disease, or someone you love is, or when your children at risk, I mean, why don't people do more????? I know not everyone has money to donate. I know not everyone can ask for hundreds of thousands of dollars. But everyone can do SOMETHING!

OK. Rant over. I'm out there trying to raise $1 million (and possibly more) while on treatment and facing my own uncertain future, talking to people, making contacts, asking for money. And I don't mind doing it. I want to do it. I just wish more people who have a vested stake would help.

Julie

[KWT]

There's plenty of money out there, it's just our government prefers to spend it on wars and tax cuts to the one percent.

Think about that in November. I'm way more worried about Cancer and Monsanto than ISIS

[Julie YW]

Yeah, and it takes people who are affected by colorectal cancer to convince the people who run our government to change their priorities. That too would be doing something.

[NWgirl]

All I ask is that people contact their Senators and Representatives to let them know that funding for CRC research is a priority. That's it. An email or a 30 second phone call. I know most people don't do it. Heck, just look at the dismal percentages of people who vote! That about says it all. But we can't give up. We have to keep trying. If not us, then who? You have always achieved tremendous things Julie and I don't doubt that you will continue to do so. Vent away, but never give up on trying to make a difference. We can all contribute in either big or small ways and most importantly, we should all try.

[janklo]

I agree but we all have to do it in our own way. My husband and I volunteer with Komen because colon cancer is too close for us right now and my mom died from bc. I feel like working to raise money and awareness for cancer in general helps us all in some way.

For colon cancer, we do the Boxer 500 and we doubled our team size in 2 years. Thats raising awareness, grass roots style.

If I can get one person to get a colonoscopy or mammogram, I will feel accomplishment. You have accomplished so much Jule and while undergoing treatment.

[kiwiinoz]

Julie
Understand your own frustrations and angst on this subject but even as someone who lost their Father to cancer (just over 1 year before by own stage IV DX) I was apathetic at best to this sort of fundraising. Even now I find it hard to understand why each running event I go into has a [insert your favourite health cause] sponsor. What I mean by this is that everyone has their own wagon to push, be that cancer or something else. The government including those in the North of America / Canada, is fighting a losing battle to support a rapidly aging population that is demanding more and better healthcare.
I can see your point in that if we don't push we can't advance the healthcare which is why we should not rely upon the government, but it is hard to fight against peoples desire to not face up to issues until they are forced to.
Kiwi

[jgall]

You know I love ya, Julie, and have admiration for the fundraising you are doing, but why do you think others are complacent? How can you be certain they aren't just focussing their efforts elsewhere?

You know I work in fundraising...I've dedicated my career to raising money for cancer, so I speak from a position of some knowledge in the field. It is a well known fact in the biz that younger people are generally not philanthropic. In fact, at the organizations I have worked for the average age of our donors has been north of 70. And speaking from personal experience I didn't give much thought to philanthropy until I was in my 40s, and by the time cancer came into our lives my philanthropic passions were placed in other areas that had deeply affected my life (such as suicide prevention). I guess the point I'm trying to make is that I take issue with your assumption and generalization that people are complacent if you don't visibly see evidence to the contrary. How can you personally know where people are focussing their philanthropy? And considering the general population doesn't even really act on or develop philanthropic intentions until they are generally older, is it even fair of you to get angry at them for it?

I'm trying to follow your logic here so bear with me on this...but from what you've written it sounds to me like you're saying you've called on people to do something, but if they haven't donated to your cause then they are complacent?

Maybe I've completely misinterpreted what you're trying to get at, but that's how I'm reading what you said and it just doesn't feel right or fair. I guess in life I worry about me and what I can control. Certainly there will be those that are complacent or haven't developed a philanthropic sense yet, but I just don't see the value in spending my energy on what everyone else is or isn't doing. YMMV.

Respectfully submitted,
Julia

[kirac]

All I ask is that people contact their Senators and Representatives to let them know that funding for CRC research is a priority. That's it. An email or a 30 second phone call. I know most people don't do it. Heck, just look at the dismal percentages of people who vote! That about says it all. But we can't give up. We have to keep trying. If not us, then who? You have always achieved tremendous things Julie and I don't doubt that you will continue to do so. Vent away, but never give up on trying to make a difference. We can all contribute in either big or small ways and most importantly, we should all try.

Julie - I sort of 'get' your frustration. I think many people don't have the energy to do anything but deal with the cancer. Interestingly, I think it's sort of a marketing problem. If we figure out our target market and mapped out how the different groups could contribute then we could get more responses. I mean, figure those that will share on social media, those that will donate time or money, etc. I mean, a viral marketing campaign is what it took to get ALS substantially funded. If NWgirls' request was to be done, we would just provide an automatic link that would lead to a signature and letter/email sent.

I also think you're one of those super focused people. If you want to chat about an amazing viral campaign (to do something - not even sure what), I'm up for it.

Edit: I haven't done anything to fundraise for Colon Cancer yet as I don't have the energy yet (still recovering from last year). I suspect I will, one day. I also think fundraising is a specific skill that few people have. Thus, the need to enable people to give how they can.

[skypup]

Ive gotten at least a dozen people to get their colonoscopies. Does that count?

I also have a question about fundraising efforts. Is there not one central effort that could be supported rather than having many individual funds? I am completely naive about this area so I probably just need education, but it seems that having many different funds might be less efficient in the areas of both fundraising and research support than one centralized fund. I wondered about this way back when Gloria Borges started the Wunderglo Foundation but was too timid to ask. Thanks for any response.

[Jenjb]

I had dinner witha friend this past weekend, and he is a gasto doc....we made plans to do something like a seminar or a talk....something, next ?March at his hospital. I give money and will participate in any colonrectal awareness that is within a 4 hour drive for me. BUTT, not until I am done with chemo.....trying to work, maintain, and raise my 10 year old in as normal of a way I can.....

So I hear you and am not complacent....just exhausted right now!

[ams5796]

I raised $5000 the other day on the Dana Faber/Jimmy Fund Walk. I raised $15000 doing that same walk a few years ago. I contribute to all my friend's efforts to raise money and raise awareness. Just because I don't put it on here or contribute to your effort don't assume I'm not doing anything.


I think you might be preaching to the chorus. It may be unfair to "vent" to us.


Ann

[Oneeyeddog]

First, Julie, congrats on raising that much money. That's already a fantastic achievement. Good for you.

Just my two cents, but think you're a bit off base here and think your fury is misplaced. You say you "called on" people. What? No, you asked them to help. Maybe it's just a language thing, but "called on" sounds all wrong. The only people who call on me to do things are my boss and my wife.

And just because people don't want to give to your charity doesn't mean they are complacent or entitled. Perhaps they don't have the money or time. Perhaps they prefer to give to other charities. Perhaps they don't believe that curing cancer is even possible and prefer to support charities that fund early detection. Perhaps they are living on food stamps and working two jobs to pay their medical bills and, convinced they are ultimately going to succumb to the disease, would prefer to save their money for their kids for after they're gone. Perhaps they don't want to hang around with cancer people as it reminds them every time what they have lost. Perhaps they don't like battle metaphors and talk of fighting a war. Doesn't make them entitled or complacent.

Also, remember, people give in many different ways. Some people are loud about it (we need these people!) and others do it quietly. I'm not much of a fundraiser to be honest but I'm running a couple of marathons soon and I'm doing it for a colon cancer charity in the UK, which was very helpful to me when I was diagnosed. I also give to Cancer Research UK as they do fantastic work. Lots of cancer charities and limited funds so I choose carefully.

And you might be surprised to find that lots of people are doing something, but they are just doing it quietly. Perhaps they don't like galas or giving money but they spend all their free time helping people newly diagnosed. Maybe they help lead a support group. Or work in patient advocacy, or pull strings in Congress if they have the connections. Or maybe they're writing a cancer memoir, or blogging about a clinical trial, to help others. Some people do all these things but they just don't tell people about it. So I wouldn't be so quick to judge. I bet people are doing a lot more to help the colorectal cancer cause than you can imagine. They're just not giving your organisation their money or time. That's just the reality of fundraising. Don't sweat it.

Again, kudos to you for your fundraising efforts.

[Julie YW]

Thanks everyone for your responses. First of all, I don't care where anyone donates to my fund or not. That's not what I'm asking people to do -- "call on" was the wrong word. I don't care what it is that people do to promote the cause whether it's going to D.C. to advocacy or talking to someone about getting a colonoscopy or blogging about a clinical trial or going with a patient to chemo or emailing your senator or representative or dumping a bucket of ice water over your head. I get that people are consumed by dealing with their cancer, working, raising children, exhausted. And I get that there are other causes out there that are personal to people (but really is there a cause that's more important than the perpetuation of our own race) and I get that people who are under 40 don't feel like they can give. I came from a culture that distrusts and even hates charitable giving. But I guess I make the conclusions I do because I think people are inherently selfish, self-absorbed creates UNLESS they are are moved to be something other than that, whether it's because they've known tragedy or whatever. Look at the way donations spike after a natural disaster or some other crisis. Even those of us who have cancer get complacent and just do what's comfortable. I just want people to think what MORE they can do, to break out of that complacency sometimes. Maybe it's not much more. Every little bit helps, whether it's money or something else, but there's always the potential for MORE. I ask you how can we not at least ask ourselves when people here die constantly it seems, people that you get attached to? In addition to wanting people to think about what they could do, I hope people can think about the bigger picture, the big scheme of things when it comes to cancer. What we do has an impact for the generations to come, for our descendants. I think we should never forget our place in history and the impact we can have in shaping that history, large or small. That's all. Thanks for listening.

[stu]

Hi,
We all generalise a bit in life so not a problem. Lots do it on here too , just as you state as they feel safe and that is a great thing in the sense that we all need a safe place . I am a big believer in doing what I can, not what I can't and your right I initially did a big fundraiser , called our politicians for four years but this year a bit of complacency has crept in. I shall have a think and see what I can do to bring about change. Even if its just a little.
Thanks for your efforts and I wish you every success moving forward.
regards
Stu

[raym]

Personally other than donating, I don't have the tons of time nor energy to get wound up in campaigns and everything else. Much of my time is consumed by deal with treatments and downtime with this disease; trying to work full-time; dealing with keeping things together at the house (maintenance); spending time with family, etc.