Archive for the ‘charity’ Category

Chase the Vision, Not the Money, Part 2

June 24, 2013

Last year I published a blog post titled “Chase the Vision, Not the Money“, written in the wake of revelations about the Susan G. Komen Foundation and its questionable funding decisions and political motives. A little over a year later, we find that these same dubious practices run rampant in the spinal cord injury community at the Rick Hansen Foundation.

David Baines, a respected reporter at the Vancouver Sun, scrutinized financial statements from RHF, statements that were released only after pressure from the newspaper. In his article, “Behind the Hansen Foundation“, Baines shares his discoveries, including:

  • Exorbitant spending and huge losses incurred with last year’s 25-year anniversary celebration of the Man in Motion tour;
  • A tax credit of $1.8 million issued to Rick Hansen for the donation of his naming rights;
  • Excessive CEO (Hansen) compensation in the form of both salary and fringe benefits.

The list goes on, and I encourage you to read the full article. I was left feeling angry, disappointed, and ultimately sad to learn that this leading SCI charity, with its massive resources and name recognition, exhibits such poor financial stewardship of precious dollars.

Those of us in the SCI community should be thankful to Baines for this excellent job of reporting. We should also learn our lessons. This article illustrates once again the importance of doing one’s own due diligence when choosing which charitable organizations to support, a diligence to include:

  • Educating yourself about research science;
  • Examining where charities are investing the dollars supposedly allocated to research;
  • Studying financial reports to determine how your donations are being spent.

Performing due diligence does not take a lot of time in the Internet age. The U2FP website is filled with resources to help beginners and veterans learn more about research science. In the U.S., nonprofits are required to make their tax returns available to the public, and most can be accessed at the Foundation Center‘s 990 Finder page. Charity Navigator provides ratings for charities in the U.S. with revenue over $500,000.

While the Hansen story is shocking and disturbing, perhaps the silver lining will be increased scrutiny from donors, both public and private, when contributing to charity. In the world of spinal cord injury, it is imperative that individuals make educated investments of valuable time and money, and that government increases its oversight of the funding it provides.

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Speaking Truth to Power

May 7, 2012

If we’re ever going to gain traction as Cure Warriors, we’ve got to speak out to the various individual and organizational leaders in the spinal cord injury community.  Thanks to the persistent efforts of Dennis Tesolat (also known as Mr. “Stem Cells & Atom Bombs”), there is a respectful yet pointed appeal to the Rick Hansen Foundation (RHF) that as of today boasts over 700 signatures from around the world.

The Foundation has long proclaimed its vision to be “a world without paralysis after spinal cord injury”.  That’s our goal, too, so several months ago Dennis and a few of his friends sent RHF’s CEO a simple request:

  • “Please outline your spending on translational research for central nervous system regeneration, i.e. a cure for spinal cord injury.”

The response failed to outline any specifics other than what’s available in their annual report, i.e. – “81% goes to charitable programs.”  Dennis wasn’t satisfied, so he decided to get organized and continue to ask questions.  He asked for more details on RHF’s spending, and for Rick to publicly answer the questions at next week’s Interdependence Conference of SCI leaders.

I imagine most of my readers have already signed the appeal, but if not, there is still time if you do it today.  It’s an easy, one-click process from the Stem Cells & Atom Bombs website.  Follow this link.

The Rick Hansen Foundation earns annual revenues in excess of $20 million, 71% of which comes from Canadian national and provincial government funds.  This is an extraordinary amount of money, and with these types of resources the Foundation should respond to the wishes of the SCI community.

We respect the work that RHF has done to improve accessibility and quality of life for people living with SCI.  At this point in time, however, with so much promising regenerative research on the cusp of translation, it’s time for the Foundation to turn its attention and its resources to the achievement of a cure.  As survivors of spinal cord injury and family members, we have the right, and even moreso the responsibility, to speak up to those in power at the Rick Hansen Foundation.

Chase the Vision, Not the Money

February 3, 2012

I had no sooner finished posting this blog entry than the Komen Foundation announced that they were reversing their decision on funding Planned Parenthood.  No matter – the damage has been done and there are still lessons to be learned.  Read on.

This week the Susan G. Komen Foundation announced that they would no longer provide funding to Planned Parenthood for breast cancer screenings.  The decision sparked a huge firestorm of outrage as well as some serious investigative journalism into the reasons behind the defunding.  It’s a revealing story that illustrates the perils of prosperity and offers important lessons for charities and donors alike.

Komen is practically a household name, and its ubiquitous branding with pink ribbons, pink shoes, pink gloves, etc., is the envy of patient advocate organizations worldwide.  Like many advocacy groups, it started with a personal connection to a particular disease/condition.  When her older sister Susan died of breast cancer in 1980, Nancy Brinker Goodman founded SGK in her honor. 30 years later, Komen has annual earnings of nearly $400 million.

Komen has unquestionably raised awareness about breast cancer and pumped millions into research and public health education. And yet, in terms of finding a cure there really isn’t much to show for the effort.  Komen’s own website reports that the incidence of breast cancer has actually risen slightly over the last 30 years. During the same timeline, the mortality rate (time of diagnosis to time of death) has decreased somewhat for white women, but shows a slight increase for black women.

In their highly sophisticated marketing campaigns, they brand themselves as “Susan G. Komen for the Cure”, raising money via the “Race for the Cure”.  Unfortunately, rather than chase that vision they’ve fallen prey to the allure of money and the corruption of politics. Komen has built the kind of empire that is seen all too often in the “charitable foundation” arena; a marketing machine whose lavish salaries and political agenda drive its decision-making.

When you’re trying to keep a nonprofit viable it’s easy to lose sight of what got you started in the first place.  Everyone needs money to maintain and expand valuable programs.  But when your priorities shift from chasing the vision to chasing the money, the people and purpose you are supposed to be serving can get lost along the way.

We don’t know where Komen is headed from here, but nonprofit leaders would do well to take a lesson from this enormous blunder and the story behind it. Donors would be well-advised to take a hard look at the charities they choose to support, and do the research to find out where their money is actually going.  In the words of The Guardian’s Lizz Winstead,

“Last I checked, a pink breast cancer awareness toaster isn’t a substitute for affordable chemotherapy.”


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