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Monday, December 21, 2009

Online Charitable Contests REMASH: Dear Beth K.

This post is in response to the Chase Community Giving Contest controversy and the many blog posts and articles that have ensued. This post is an open-letter response to Beth Kanters blog post linked below.

Dear Beth Kanter:


Thank you for all the time and thoughtful effort you put into your research re: cause marketing. Your depth of knowledge and dedication are amazing. Your hard work and passsion are an inspiration to many more people than you could possibly imagine. As I posted yesterday on Facebook, I think that we all (corporations, non-profits and individuals) are on a learning curve here and much can (and hopefully will) be learned from the Chase missteps.

And to All the Naysayers:

There ARE many non-profits that will happily continue to participate in any way, shape or form to increase their chances of funding. Especially smaller ones like the Ehlers Danlos Syndrome Network Cares that is one of the 100 finalists in the CHASE contest
I am speaking from experience as a volunteer for the

National Marfan Foundation and believe me when I say that this is not a popularity contest to all of us who work tirelessly to promote awareness of all connective tissue disorders and chronic diseases. It is probably a safe bet to say you don’t know much about EDS. Do you know what Marfan syndrome is? Would there be much chance that you would hear about these organizations if those of us working so hard and trying to compete with more well named and recognizable charitable organizations for very competitive donation dollars were to choose not to participate?

A Mission and Vision
I am in the process of building a Non-Profit Organization to Fund Post Secondary Education for Young Adults who have chronic medical conditions such as EDS and Marfans syndrome and those who have survived catastrophic illness as children or teens. Many of these young adults have the tremendous talent, passionate desire and strong will to contribute (and do not want to go the route of SSDI/Medicare). However, in many cases, their chronic illness does not allow them to physically attend and complete a “traditional” university education on a full time basis. Nor do their parents have the financial resources to support extending their educational funding beyond the typical college student to the 7 to 8 years that would be the minimum necessary for them to complete a degree program. Especially since these families have been straddled with health care costs that supersede college investment plans. Even with “good insurance coverage”, between co-pays, coverage limitations, prescription medications and non-covered services many families struggle to keep current on their everyday bills. Again I speak from experience. And to compound matters, if these young adults do not attend college full time, they can no longer be covered on their parent’s health insurance and are “uninsurable due to pre-existing conditions” or “insurable, but with prohibitive premiums”. While this health care dilemma is a separate issue that myself and many other “full time volunteers” have been working on also, it is peripheral to the topic today so I will not digress further. My point is simply: these individuals want the opportunity to learn, contribute and pay their own way. With very few exceptions, the only way they will be able to do so is with assistance that is not available to them currently.

And Back to the Main Topic for Today

And therein lies the beauty and hope inherent with these Online Contest programs. Yes, I was a business major so I know all about the “marketing sense” that motivates companies to take this route. Yes, I can be as cynical as the next person if I choose to when considering the bottom line mentality of large corporations. Challenge their motivation all you want. But I challenge you to walk a day with me. See the hope that each new lead can bring to those who volunteer at the grass roots level, on a daily basis with just a slight opportunity for 1) the possibility of any funding 2) increasing awareness of their cause 3) networking

And to Beth
Who I quote “Do these contests really have impact? Do they really help nonprofits or distract from their work? Or is this just marketing?”
1) Yes, these contests really have an impact.
2) Yes indeed, they CAN help nonprofits, especially through funding. And any distraction factor to their paid workers is outweighed by the potential for a tremendous amount of increased CAUSE awareness and other intangibles (and in the case of EDS Network Cares and the National Marfan Foundation—most of the soliciting and networking for votes is done by unpaid but extremely effective and passionate volunteers).
3) Marketing yes, “just marketing" no. Call me a Pollyanna but I choose to see the good in everything and leave the cynicism to others for now. I have too much work to do to approach this any other way. Gullible? I don’t think so. Hopeful, hell yes. Motivated and driven, you bet. I and many more like me have too much work to do and too many things to accomplish to choose to be any other way.
Stephanie Parkinson
I urge you -- please leave a comment. As a neophyte blogger with much to contribute, your support and comments are greatly appreciated.
I may be disabled, but I have a voice and a computer, passion, focus and drive so Open Mouth/Insert Topic.


Anonymous said...


Terrific post! Thanks for your response! I think we're still learning - and that's why I posed the question.

Good luck in the next phase of the contest!

Anonymous said...

That is a GREAT idea for a non-profit! I know you'll make it happen.

Laurel Giacone said...

this is so so great, stephanie! I'm so glad you've put so much effort into organizations such as EDS and MFS because it gives me hope for a better future, not to sound cliche. Your nonprofit makes me so excited, and i can't wait to see it happen!

Holly said...

Please let me know what I can do to help you with this on social media. This is a great cause and people need to know about it.

Kind Regards,
Holly on Twitter