An idea that occurred to me today: if... - Advanced Prostate...

Advanced Prostate Cancer

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An idea that occurred to me today: if you think I am crazy, say it but be gentle!! :-P

Maxone73 profile image
8 Replies

I had an idea, certainly not new but that might work.

Why don't we (partially) fund one of the clinical studies that we find most interesting? It would be interesting to create a non-profit association and use it to raise funds to support one of the existing clinical studies (to be voted on democratically among all the members who have contributed). We could receive monetary donations but also, for example, provide services. Many of the members of this site are retired, and perhaps they would have a few hours a week to devote to the cause. Even simple things, like "I mow the lawn of your garden in exchange for a donation." For example, I'm not close to retirement, but I still have time to provide services on behalf of this hypothetical association. I have a lot of experience in website development (it's 70% of my job). So I could dedicate 5-10 hours a week to develop websites for clients who would effectively be clients of the association and not directly mine, who would pay the association for the creation of the website, which in turn would use the funds to finance an existing research project. I don't know how it would work from a legal standpoint; I know that donations are usually fully tax-deductible, but I don't know if companies are allowed to make direct donations (I guess it depends on the jurisdiction).

I know I can make donations as an individual, but it always seems to me that the money gets lost in the intricacies of various bureaucracies. I would like something over which I can have a bit more control.

Is this a very stupid idea? I'm looking for a new purpose in life since I know that the time I have left might be quite short!

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Maxone73 profile image
Maxone73
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8 Replies
MouseAddams profile image
MouseAddams

We too are into funding research. All of our assets are in a trust fund with no children to worry about…

When we both pass on it will go to Scripps Research in Florida scripps.ufl.edu

At one time we also actively donated to Scripps Research in California

We chose to do it this way because we looked for agency that used the majority of our assets for research and not administrative expenses. One thing we checked to see what history they had with use of past funding. If you look at the website you will see all the types of research they do

Maxone73 profile image
Maxone73 in reply toMouseAddams

Very well done!!

Tall_Allen profile image
Tall_Allen

Government organizations contribute a lot towards research funding. In the US, NIH/NCI is the biggest source ($7.3B) and the Dept. of Defense/CDMRP (oddly enough) are the largest sources of cancer research funding. NGOs, like PCF, also contribute. All of those organization review grant proposals. NGOs rely on individual contributions, and we finance governmental orgs with our taxes.

Most funding comes through Big Pharma and other private industry. University medical centers usually rely on grant funding through other entities.

I recall contributing to an early BAT study through GoFundMe when a dysfunctional Congress was not funding NIH/NCI.

In the UK, NHS funds most research, especially the STAMPEDE trials. In France, UNICANCER funds most trials.

skiingfiend profile image
skiingfiend

Wut? People paying me to mow my own lawn. Why didn't I know this was a thing.

Darryl profile image
DarrylPartner

that has already been tried, several times. First with startacure.org followed by half a dozen others by other nonprofits following (copying) our model.. Start a cure funded several small studies, chosen from a menu of existing trials and a few proposed by patients. Ultimately we found that patients will talk the talk but fail to walk the walk with their financial support.

Currently Malecare helps fund research by collaboration or through our small but mighty research group. In this way, we avoid the massive administration charges that other nonprofits reap.

MarkBC profile image
MarkBC

An interesting idea. Donations to cancer research have played a big role in the enormous advances that have been made in the last 40 years.

I just wanted to mention that donors sometimes want their donations targeted to specific projects that they think are important. I have been involved with organizations before with lots of targeted money but not nearly enough to cover general expenses. Office space, phone lines, computers, admin assistants, etc are vital to keeping special projects running so please don't think non targeted donations are wasted. It's good to let the experts in the field spend the pool of money in the areas they deem to be high priority.

Maxone73 profile image
Maxone73

Ok, got it!

carbide profile image
carbide

You are very idealistic, Perhaps even naive.You should study, how Big Pharma purchases the research, then patents the idea and brings the new drug to Market at tier 6.

Follow the money, it called Capitalism.

I'm sure you have good Intensions.

Remember, list price on Zytiga is $15K/mo.

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