Tonight's picture was taken in June of 2004. Mattie was two years old and as you can see he had flopped into Peter's lap. This was a rare occurrence in our home. Since Mattie had two modes.... on and off. There was no napping or down time. Typically if Mattie wanted to rest his head, that meant he had a fever and wasn't feeling well. Resting was so unusual to see, that when Mattie did stop moving I photographed it!
Quote of the day: Anybody can become angry — that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way — that is not within everybody's power and is not easy. ~ Aristotle
Aristotle's quote was BRILLIANT. There are a lot of things within the childhood cancer space that anger me. Let's start with the disease itself! Which of course is intertwined with the fact that the disease killed Mattie and changed our lives forever. For the most part I am a very level headed person and people tell me all kinds of things, and I don't fly off the handle. But when you start talking about Mattie Miracle, well watch out. It takes great restraint from me not to lash out, especially when I feel two things..... 1) you don't understand the complexities of the childhood cancer non-profit space, and 2) you don't truly comprehend or appreciate what Mattie Miracle does.
Today I was on a phone call, and retreated from responding. That was the most mature thing I could do, because when so livid, nothing professional nor kind was going to come out of my mouth. So at first I felt angry over this particular conversation. But then I reflected on Aristotle's quote and realize my issues are truly bigger than the phone call. I realize all parents who lose a child to cancer, need to express their grief in their own way. I certainly don't judge that, but there is a fine line between loving your child and honoring their memory and exploiting a very bad situation in order to raise funds. It is the latter that I take grave issue with.
We live in a society that doesn't always reward or acknowledge substance. I think that is ultimately what makes me mad. Instead of valuing what Mattie Miracle does based on its proven merit, we have a society that rewards gimmicks. In the childhood cancer space there are many of these gimmicks or diversions as I call them. What for example? Let's take mountain climbing, walking, and bicycle riding across the country. Several non-profits select these formats and solicit families living with childhood cancer for money, in order to post a deceased child's name at certain mile markers along the cross country journey. Clearly, there are many ways to react to this, and since these fundraisers tend to generate six figures at least, you can surmise there are many families eager to support this type of activity. I fall on the other end of the spectrum. I find these gimmicks insulting and meaningless. Why? Because I find the gimmicks water down the cause you are fighting for, and worse it takes the focus off the important issue at hand and shrouds it in something more fun and media catching.
If you doubt this then take the Ice Bucket Challenge for example. An activity in which you video tape a bucket of water being tossed on you and then you tag friends on Facebook and challenge them to do the same within 24 hours, video record it, post it to Facebook and then they have to challenge five more people. If you decide NOT to do the challenge then you were requested to contribute financially to the ALS association. This gimmick was fraught with controversy. I included two articles below that talk about the issue at hand.
Gimmicks are catchy and they certainly generate funds. But what is the overall impact long term on a non-profit who does gimmicks. Given my almost 8 years of experience running Mattie Miracle, I can say the key to running a successful non-profit is to have values, principles, and be true to your mission and cause. Gimmicks make you lose sight of this. Certainly it takes longer to build a solid supporter base, but at the end of the day as a Foundation leader, you have to live with yourself and the mark you are making for the cause.
Here are two articles on the ice bucket challenge. That is just the gimmick I selected as an example, but you can replace the challenge with another gimmick, and to me the end result will be the same.
Herrera wrote in the Huffington Post, "But in the bottom of my heart and in the back of my business-oriented mind, I want people to care. I want them to connect and to be a part of something not because it’s the trendy thing, or because they want to look good to others, but because they are somehow moved and inspired by the stories, the videos, and the photos that, thanks to social media, we are able to share far and wide. So while I agree with the mentality that “something is better than nothing,” I still think we should take a good look at why we are getting involved — is it for ourselves, or for cause?"
http://www.huffingtonpost.com/jacqueline-herrera/why-the-ice-bucket-challenge-is-not-good_b_5703368.html
Hiltzik wrote in the LA Times, "The explosive spread of the ice bucket challenge could even end up hurting ALS fundraising in the long term. The challenge is a fad, and fads by their nature burn out--the brighter they glow, the sooner they disappear. The hard work of philanthropy always lies in creating a sustainable donor base. But the ice bucket challenge has all the hallmarks of something that will be regarded in 2015 as last year's thing."
http://www.latimes.com/business/hiltzik/la-fi-mh-ice-bucket-challenge-20140818-column.html
1 comment:
Vicki, Excellent Post! Today, the world is full of gimmicks that catch people's attention & interest. In the world of Childhood Cancer, there is no room for gimmicks. This is of course, my opinion! But Childhood Cancer non profits need donors that are committed to the cause of raising awareness & donating funds so the Charity can accomplish their mission. I also take issue with taking donations from the very people, that are being helped while their child is in treatment.
Each of us who is a part of a Childhood Cancer Charity strive to meet the goals of our mission. It is sometimes hard to feel that any accomplishments are being made when fundraisers become more about the person raising funds than the particular Charity & it's goals, it diminishes the goals of the particular Charity. In the case of Chikdhood Cancer the focus should never leave the children in treatment or their families.who are being helped!
Thank you for bringing attention to this with your thought provoking blog!
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