Non-profits

There are countless privately directed cancer research foundations. They operate under the guidance of a donor, or under the guidelines established by a donor or board. Most of these do not seek supplemental income, and many operate off of the interest on the funds held by the foundation. Since these are essentially private funds, they have the right to direct them as they please. I assume these are not the foundations you’re concerned about.

However, when it comes to non-profit organizations, corporate foundations and the like, accountability is a challenge! Most cancer non-profits are monitored by the IRS and do adhere to the tax codes. Each non-profit files an annual 990 Form which discloses some of this information, but it is also easy to hide overhead in program lines, a smoke-and-mirrors game that makes them look like a much healthier organization than they are. I have concerns about the salary lines at the top of some organizations, as well as whether the money they distribute is consistent with their stated missions.

My goal is greater transparency. Non-profits who are truly in it for their mission should disclose, in plain English, how their money is spent. Any donor should be able to readily discern how much goes to direct service, overhead, research, etc, BEFORE a donation is made. Non-profits need to keep in mind that donors are significant stakeholders.

Another concern I have is the emergence of cause marketing. Countless companies now brand themselves with a high-profile non-profit, or use these partnerships to sell products. In this case, I believe every product label or advertisement should include the nature of the partnership (i.e. how much per purchase is donated to which organization under what circumstances). Caps on donations should also be disclosed, and again, the information about what is done with the money should be readily available (for example, by visiting a website that is also included in the advertising).

Until we have such a system, if I do not feel I can get the information I need to assure myself that their giving is in keeping with my priorities, I tend to give to local, direct-service organizations and local research foundations, where a personal relationship goes a long way to being able to follow the money.
There are countless privately directed cancer research foundations. They operate under the guidance of a donor, or under the guidelines established by a donor or board. Most of these do not seek supplemental income, and many operate off of the interest on the funds held by the foundation. Since these are essentially private funds, they have the right to direct them as they please. I assume these are not the foundations you’re concerned about.

However, when it comes to non-profit organizations, corporate foundations and the like, accountability is a challenge! Most cancer non-profits are monitored by the IRS and do adhere to the tax codes. Each non-profit files an annual 990 Form which discloses some of this information, but it is also easy to hide overhead in program lines, a smoke-and-mirrors game that makes them look like a much healthier organization than they are. I have concerns about the salary lines at the top of some organizations, as well as whether the money they distribute is consistent with their stated missions.

My goal is greater transparency. Non-profits who are truly in it for their mission should disclose, in plain English, how their money is spent. Any donor should be able to readily discern how much goes to direct service, overhead, research, etc, BEFORE a donation is made. Non-profits need to keep in mind that donors are significant stakeholders.

Another concern I have is the emergence of cause marketing. Countless companies now brand themselves with a high-profile non-profit, or use these partnerships to sell products. In this case, I believe every product label or advertisement should include the nature of the partnership (i.e. how much per purchase is donated to which organization under what circumstances). Caps on donations should also be disclosed, and again, the information about what is done with the money should be readily available (for example, by visiting a website that is also included in the advertising).

Until we have such a system, if I do not feel I can get the information I need to assure myself that their giving is in keeping with my priorities, I tend to give to local, direct-service organizations and local research foundations, where a personal relationship goes a long way to being able to follow the money.

Even though I'm not the founder of the Inflammatory Breast Cancer Research Foundation, I have been involved from the very early beginnings back in 1999. I think one of the most important aspects to consider when starting an organization is determining if there is a need for the organization.

As a group, we looked at what breast cancer information/education was 'out there' and realized there was next to nothing about inflammatory breast cancer and there was very little research focus. For those reasons we opted to keep our focus quite narrow. There are great organizations doing a wonderful job with information and support for standard breast cancer and we have no desire to duplicate what they are doing. We keep our focus on inflammatory breast cancer (IBC) and try to make our website and other information specific to the needs of the IBC community and those seeking IBC information. IBC research was extremely limited so we knew that needed to be a primary focus.

Funding is always a challenge. By remaining focused, not having a walk-in office, or paid staff we are able to keep our administrative expenses to about 7% of our budget. This allows us to put well over 90% of received funds into the mission and goals. In these economic times it can be difficult to function solely on private donations but we've been fortunate to have people who believe in what we are doing and contribute as they can.

In recent years we've partnered with a private foundation on some grants so we are able to support more research projects with their support. Often more can be accomplished if we find ways to work together.

Ultimately it is all about passion. You can't do this kind of work unless you have a passion for it. We aren't in it for recognition, personal gain, and certainly not for financial gain! Each of us involved with the Inflammatory Breast Cancer Research Foundation does so because the disease has touched our lives in some way and as a result we've realized we must act. No longer is it about "us"...it is about all those who have been touched by IBC and trying to build a future without this disease. Even though I'm not the founder of the Inflammatory Breast Cancer Research Foundation, I have been involved from the very early beginnings back in 1999. I think one of the most important aspects to consider when starting an organization is determining if there is a need for the organization.

As a group, we looked at what breast cancer information/education was 'out there' and realized there was next to nothing about inflammatory breast cancer and there was very little research focus. For those reasons we opted to keep our focus quite narrow. There are great organizations doing a wonderful job with information and support for standard breast cancer and we have no desire to duplicate what they are doing. We keep our focus on inflammatory breast cancer (IBC) and try to make our website and other information specific to the needs of the IBC community and those seeking IBC information. IBC research was extremely limited so we knew that needed to be a primary focus.

Funding is always a challenge. By remaining focused, not having a walk-in office, or paid staff we are able to keep our administrative expenses to about 7% of our budget. This allows us to put well over 90% of received funds into the mission and goals. In these economic times it can be difficult to function solely on private donations but we've been fortunate to have people who believe in what we are doing and contribute as they can.

In recent years we've partnered with a private foundation on some grants so we are able to support more research projects with their support. Often more can be accomplished if we find ways to work together.

Ultimately it is all about passion. You can't do this kind of work unless you have a passion for it. We aren't in it for recognition, personal gain, and certainly not for financial gain! Each of us involved with the Inflammatory Breast Cancer Research Foundation does so because the disease has touched our lives in some way and as a result we've realized we must act. No longer is it about "us"...it is about all those who have been touched by IBC and trying to build a future without this disease.