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How Founder’s Syndrome Hurt the Komen Foundation

By Nell Edgington

Last week’s stunning PR nightmare at the Susan G. Komen Foundation is a textbook example of how not to run a nonprofit. Komen decided early last week to pull all funding from Planned Parenthood and then went radio silent in response to an increasingly angered social media network. Finally they flipped their original decision while firing the anti-Planned Parenthood vice president for public policy, Karen Handel.

Komen’s PR response was woefully inadequate, their social media efforts were non-existent compared to Planned Parenthood’s, and their board decision-making process was flawed. And all of this follows their brand-busting decision last year to partner with KFC.

Obviously, the organization is not making good decisions.

But few people are placing the blame for these missteps where it should probably go, at the top. Karen Handel herself argued that she wasn’t the only decision maker, “I clearly acknowledge [my role] in the process, but to suggest I had sole authority is just absurd. The policy was vetted at all appropriate levels.”

I wonder if Komen isn’t suffering from classic founder’s syndrome. Founder’s syndrome is when the original founder of a nonprofit (or a leader who has been there for a very long time) creates a culture where:

  • Power and influence all reside within the single founder
  • The brand of the organization is inextricably linked to the personality of the founder
  • Staff are powerless to speak up and be heard when they disagree with certain decisions
  • The board of directors merely rubber stamps founder decisions and have no real authority over and provide no strategic direction to the organization
  • Decisions are rarely tested or debated

Komen was founded by Nancy Brinker when her sister, Susan G. Komen, died of breast cancer in 1982. For such a massive organization (a 2010 budget of $400+ million), the Komen Foundation only has 9 board members, most of whom are friends or family of the founder . The organization’s structure and behavior have all the signs of classic founder’s syndrome.

In a healthy nonprofit environment, staff are allowed (even encouraged) to push back, ask hard questions, have their dissenting opinions heard.  And the board of directors has the ultimate strategic and fiscal authority for the organization. As a group, they debate and grapple with big strategic decisions. And, as a group, board and staff together are charged with achieving the mission.

When founder’s syndrome is present it can spell trouble for a nonprofit. Far beyond the PR nightmare we have witnessed the past week with Komen, founder’s syndrome can fundamentally weaken an organization. It can make the organization’s funding and brand name overly reliant on one person. It can cause a lack of critical and innovative thinking. Ultimately, it can mean that the organization becomes less about social impact and more about the personality of the founder.

What has played out with the Komen Foundation over the past few months should be a cautionary tale for other nonprofits. To be strong, effective, innovative and sustainable, a nonprofit must encourage a culture of group ownership. It remains to be seen if Komen learns from their mistakes, but at the very least perhaps other nonprofits can.

If you want to learn more about overcoming founder’s syndrome and creating a succession plan for your nonprofit, check out the Moving Beyond a Nonprofit’s Founder webinar.

Photo Credit: Jeffrey

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About the Author: Nell Edgington is President of Social Velocity (, a management consulting firm leading nonprofits to greater social impact and financial sustainability. Social Velocity helps nonprofits grow their programs, bring more money in the door, and use resources more effectively. For more information, check out Social Velocity consulting services and clients.

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13 Comments to How Founder’s Syndrome Hurt the Komen Foundation

February 8, 2012

absolutely right. Its sad that so many non-profits suffer from this and its is disheartening to see it happen at a large and well known one. Founder’s have a lot of passion to fuel their ideas into an organization but that does not mean they have the skills to manage and make the right decisions when the organization grows. People on boards who are merely given tasks need to be more critical and should question whether they are working on behalf of the organization or on behalf of the Exec. Director.

Richard Angeli
February 9, 2012

As a founder myself, I have come face to face with the reality that Founders, operate on a different paradigm base, than Managers. I founded the Non-Profit KEMOTrail Corps, inc (DBA Kennesaw Mountain Trail Club) In 2002. I served a President until the spring of 2009. I’ve been proud and amazed at how the organization has grown and progressed since I “got out of the way”. There are often many skilled, qualified, motivated, people serving on your board that may be intimidated by a strong leader.

Anne Sherman
February 9, 2012

Nell: I think that you make a very interesting point. Not knowing a whole lot about the Komen Foundation, beyond what I read in the news, it does sound like a case of founders’ syndrome. Given the intensely personal nature and emotional basis for founding the organization in the first place, how could it not be? I have spoken with others associated with family-founded organizations created to raise money for a disease that killed a loved one, and my guess is that this experience is not atypical.

One observation about founders’ syndrome–it’s not just for founders. There are many organizations exhibiting the symptoms you list (a very good list, BTW). This can happen to any organization where an E.D. has either been around long enough or has had enough of an impact on the organization that no one can really remember what things were like before s/he got there.

I absolutely agree that “group ownership” (which would entail group accountability) is the cure for this illness, in either case.

[…] a larger problem of founder’s syndrome. It should be a cautionary tale for other nonprofits.Via Like this:LikeBe the first to like this […]

February 14, 2012

Why was Komen supporting planned parenthood anyhow? They are an organization trying to prevent breast cancer. How is planning babies related?

Nell Edgington
February 14, 2012


The money Komen gives Planned Parenthood goes for breast-screening exams for poor women. See this article from the Atlantic: These women would have no other opportunity to have mammograms.

[…] an FS-stricken organization, decisions are rarely made collectively. Nell Edgington recently noted in her blog that FS occurs in organizations with a culture […]

Phila N Thropy
March 5, 2012


You are correct in your comment on family-founded organizations and this experience not being atypical. I personally know of three. Two of which the founders were finally convinced to step away.
The third, the founder is also the ED and the Chairman of the board. This founder is refusing to follow guidelines and advice on best practice policy. The organization has been refused funding from sources due to the ED being the same as the Chairman and also being the founder. There is no transparency. Transparency is crucial to trust, partner relations, members, donors,community support, etc.

May 16, 2012

The published definitions of FS here and elsewhere, while accurate, are incomplete, candy-coated, and written as if to ensure no CEO or ED, however afflicted, is offended. But, down here in the trenches, it is corporate dysfunction on a scale one struggles to believe, even when it’s happening in front of you (and I’ve seen six, up close and personal). And the larger the entity grows, the more toxic the founder’s behavior becomes. The FS-afflicted founder isn’t just sitting in their office like a spoiled three year old stubbornly refusing the help and counsel of others. By this stage they go on a proactive mission to wipe out all threats, crush any hint of rebellion, scream for accountability which they immediately turn into blame and punishment. Their inability to accept that the company has outgrown their personal skillsets, even when faced with daily proof of this fact, forces the warping of their reality. In every case I’ve come in contact with, here are the real symptoms the employees, executive through receptionist, deal with on a daily basis: pathological lying, paranoia, refusal to accept personal accountability, public tantrums and abuse of “their” personnel, refusal to be pinned down to strategic details, highly selective memory on past directives, the calculated and malicious manipulation of key personnel against one and other, the engaging of a personal outside consultant who they feel they can control and therefore trust, decomposing integrity, and abusive behavior followed by extreme efforts to “make things right” again (flowers to the beaten spouse). This is not a compilation of traits from the six FS-afflicted CEO’s I’ve dealt with — it is a simple list of traits exhibited by ALL of them.

July 22, 2012

Having experienced Founder Syndorme transitions on a number of occasions, I agree whole heartedly with Jim on his characterization of the traits most often present in in-grained founders – especially those who have been sucessful in guiding their creations to relative heights. At some point the ability to guide the organization and sustain its growth becomes limited by the very traits that made them initally sucessful. In the cases with which I was intimately familiar, this tipping point was more often than not reached after many years of intimidation, divisiveness and oligarchy, but at the same time the abiltiy to take advantage of opportunities quickly and decisively. In two of the cases, the Founders ran the organization for more than 30 years and then crashed in spactacular fashion. Long term sucessful founders do not let go easily. In some cases it takes a catastrophic event (such as a reebeloion by the staff) to dislodge the Founder. Unfortunately,the organization often suffers as entrenched long term founders would rather sink the ship than alolow it to pass to the next generation of managers. The trick is how to prevent the damage during the catastrophic transition.

[…] FS-stricken organization, decisions are rarely made collectively. Nell Edgington recently noted in her blog that FS occurs in organizations with a culture […]

March 24, 2013

Hi Nell, I’m wondering if you could provide an example of any organization who did a good job overcoming founders syndrome?

Nell Edgington
March 25, 2013


I think there are a few ways that organizations can get over founder’s syndrome. One is to replace the leader with someone who can take the organization in a newer, better direction. Another, is if the founder herself can change and become a more inclusive, empowering, sustainable leader (less likely, but perhaps Steve Jobs is an example of this when he left Apple and then came back to take it to new heights).

It is difficult to move beyond founder’s syndrome, but I really believe it takes the commitment and courage of a strong board of directors to recognize the symptoms and work with the founder to change significantly, or move on.

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