Tonight's picture was taken in August of 2008. Mattie was a few weeks into treatment and as you can see was losing his hair. Ironically hair loss did not seem to scare or bother Mattie in the least. It was only people's reactions to him, seeing him without hair, that bothered him.
That day Mattie was at the art table in clinic. A place he loved to be, if he had to be in clinic. His art therapists invited him to make hand prints and other creative things with clay. To this day, I have all of Mattie's hand prints and clay pieces from clinic. I am sure back then the thinking was to keep Mattie busy, but what may not have been understood was that every piece Mattie created became a part of his legacy.
Quote of the day: Wishing good, merely, is a lukewarm charity; but doing good is divine. ~ James Lendall Basford
For the last month or so, Mattie Miracle has been working with a professional organization who is managing a grant we wish to fund. We chose to house our grant in a professional association, because it gives the grant more visibility nationally. Our primary purpose for this grant is to support researchers who wish to conduct implementation research on the Psychosocial Standards of Care. In addition, when the request for proposal went out, keep in mind that Mattie Miracle was going to fund only ONE grant at $10,000.
But then the grant applications came rolling in and given this is our first year, I am surprised that we received about 25 applications. Not just the amount of applications was surprising but the quality of the proposals, the attention to detail, and how serious each researcher took the application process. I was VERY pleased with what I read! What I did not count on however, was how the association's review committee was evaluating the proposals. Proposals which I thought were excellent were only getting lukewarm ratings from the scientists. So then I asked to specifically look at the criteria they were using to evaluate each application. It became very evident to me that how the committee was defining implementation research and how Mattie Miracle was defining it were two different things.
It would have been easier for me to have kept quiet. As in this circle I am NOT a scientist or the expert on this research. However, I remind myself constantly that I have lived this experience and they have not. Of course having an educational background like mine helps as well. I debated for days about what to do about the committee's evaluation process. Then what pressed me to speak up was the simple fact that the committee was going to have a conference call to make a final decision. At that point I rationalized with myself that I work way too hard to raise Mattie Miracle funds, therefore, we have every right to vocalize our concerns and to spell out what we will and what we will not fund.
I wrote my email to the committee the night before their conference call. I was very professional, but got my message across. Now moving forward to today. Today I had a call with the two review committee chairs. We talked about the review committee's decision. However, they mentioned to me how helpful my email was to the researchers because I explained Mattie Miracle's point of view on implementation research. As I told them we want to fund actionable research, research that will product something that can be potentially adopted around the country and used by psychosocial professionals at treatment sites.
What started out as funding one grant, landed up with us funding 6. Not all at the $10k level though. I can't talk about this in more specifics because all applicants need to be notified about this decision first. But to make a long story short, as of today, Mattie Miracle will be funding 6 implementation research grants and will be spending $37,500 in total. The intention of the grants is very specific..... researchers have to be doing actionable research, they will need to present findings at a Mattie Miracle symposium (held at a national association conference), and try to publish their work (acknowledging Mattie Miracle as the funder). The wonderful part about this is we are the ONLY Foundation providing such implementation grants and this support has the capacity for moving forward our mission to implement the Standards at sites around the Country. In addition, awarding such grants will enable researchers, clinicians, and the community to understand Mattie Miracle's commitment and vision on the national level.
As Peter reminded me today..... I work hard to raise funds. I am clear on Mattie Miracle's vision, and therefore am the right person to set the research vision for these grants. For a brief moment today I was happy and proud. That everything is tied beautifully together..... my hard work raising money, being able to personally direct this money to research, and knowing that this research will help carry out our mission which is ultimately to change the direction of cancer care for children in our country.
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