Archive for the ‘nonprofits’ Category

Back to the Future

November 24, 2014

Thanksgiving is my favorite holiday; the name itself verbalizes an action that we should all practice more frequently. Our personal family tradition is to gather with a group of friends we have known for over 40 years, and this Thursday marks our 35th annual celebration. Ironically, it was on Thanksgiving weekend 12 years ago that a flying wheel broke my son’s neck and introduced all of us to the world of spinal cord injury. Our second family, the ones with whom we share Thanksgiving, were the first responders and have been loyal supporters in the years since.

That Thanksgiving event forever changed my life, and in time led to the founding of Unite 2 Fight Paralysis. I am NOT thankful for my son’s injury, don’t believe it happened for a reason, and am not here to inspire anyone. But once SCI came into our lives, it became clear that I should use the skills I have to fight its devastating effects. I am grateful that U2FP has given me a way to do that.

Last week I attended the “Partnering for Cures” conference in New York City. As a first-time attendee, I was admittedly overwhelmed by the level of brilliance, passion, & expertise in the room. Presentations and panel discussions covered every stop along the continuum from basic research to clinical practice. Patients, advocates, funders, and regulators joined in lively conversations about how to achieve results. I met representatives from a variety of disease groups, including many working on behalf of so-called “rare diseases” with small patient populations as in SCI.

Link to Agenda & Videos from all of the Partnering for Cures Sessions

I am still processing all of the ideas and information from the conference, but my mind keeps coming back to the overriding theme of “patient-centeredness and participation”. We have entered an era where, thanks to patient demand, we are gaining a more influential voice in decision-making, from what research to fund all the way to designing clinical trial endpoints. It is now our responsibility to expand our knowledge and commitment in order to provide educated input to these processes.

What role can U2FP play in this evolving paradigm? In the world of spinal cord injury, the patient movement is just beginning. For a variety of reasons, other disease groups are farther along and many have successes to report. We have the opportunity to learn from their achievements as we chart a path for the future.

To date U2FP has dedicated most of its resources to patient education. And BTW for those of you who object to the word “patient”, if you want to be part of this movement you’d best get used to it. As one P4C panelist said, “Nobody wants to be a patient”, but I daresay it’s not worth quibbling over. Spend your energy learning about the details of SCI and what it will take to repair and recover.

U2FP has a bucket list of possible projects to get this community moving toward greater participation, including things like expanded education, data collection, increased partnering, and organizing advocate activities. We can’t undertake any of these projects without your help, however. At the moment our resources are stretched to the max, and we need more funding to take on anything new.

As we enter the season of “Giving” and “Thanks”, please consider donating to U2FP so we can continue to expand our services and lead the SCI community toward 21st century cures. Our “Giving Tuesday” (Dec. 2 ) campaign is now active, and you can support U2FP year-round (and especially at the holidays) by using our Amazon Smile gateway for all of your Amazon shopping.

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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.

The Big Picture

August 30, 2012

For most of the summer I have been writing content and assisting with the design of our new U2FP website. At times tedious, at times a labor of love, this exercise triggered a lot of reflection on how we have grown and evolved in the 5 years since our last website remodel.

For me personally, my U2FP journey has been a hugely educational experience on many fronts:

  • Understanding the science. This is an ongoing process, especially in such a complex field as neuroscience and regeneration. It’s not unlike learning about all the complications of a spinal cord injury. Slowly but surely we grasp the terminology, the sometimes grim realities, and finally a sense of what it will take to make things better.
  • Assessing the landscape. Where does curing paralysis stand in the broader field of medical research and translation? When we identify good science, how do we attract investors and bring it to clinical trial? How can we make our cause a priority amongst such worthy competition? The answers to these questions change with the financial and political winds.
  • Connecting with the community. This is far and away the most rewarding aspect of my job and the most energizing. It’s easy to get bogged down in the daily details of managing our programs – trying to catch up on emails, attending to the minutiae of organizing a conference, satisfying the various regulatory requirements. Just when I think that’s what my job is, I’ll hear from or read about or meet someone living with a spinal cord injury who is working so hard to make the very best out of a tough hand.

It’s a welcome reminder that in the end, our mission and our goals are about people. Less than 2 years after my son’s injury in 2002, I remember an “ah-ha” moment when I thought about all the extraordinary people we had met on the post-SCI journey. In order to make the best out of this life, you have to operate at a much higher level of purpose. You have to practice positive thinking on a daily basis; it’s so easy to falter.

For today, as we celebrate the launch of our new website, I want to take a moment to thank all of the people I have met along the way: for your courage, your determination, your perseverance, your grace, and for enriching my life.

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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