Thursday, January 11, 2007
Update as of Thursday 11, 2007
Today is Maria’s 7th birthday and we thought the perfect day to announce the establishment of our new nonprofit organization, the Prayers From Maria Foundation (see: http://www.prayersfrommaria.org/ ).
There aren’t many people who realize that pediatric gliomas are the second leading cause of cancer deaths in young people and 85-95% of these children die within the first five years of diagnosis. I had never even heard the word “glioma” before Maria.
After Maria’s diagnosis, Ed and I frantically searched medical journals, books, articles and the Internet for any sign of hope that we could cling to that might possibly save our daughter’s life. What we uncovered was that childhood glioma (brain tumor) research was grossly underfunded, and there was no organization acting as a clearinghouse or translator of the state of research for newly diagnosed families. There is simply not enough being done to find a cure. It is unacceptable for a child who is perfectly healthy one day to be told that she has months to live the next.
As a mother I can’t rest in my heart knowing this information and knowing that I have the ability to do something about it. Ed and I have continuously thought about our role in the midst of this. We have tried to open ourselves to God’s plan and how we are to participate in it. I believe many successes have come about in medicine for the betterment of all because those who have been personally touched by an illness have decided not to sit on the sidelines, but to do more.
The Prayers from Maria Foundation is charged with funding research into a cure for childhood gliomas, and to advocate for families with such conditions. Initially, it is our goal to gather enough funding to provide grants to research institutions that can demonstrate how they plan to best use the money to find a cure for this child-killing disease. Eight of the very best doctors and biomedical researchers in this area have agreed to be on the foundation’s advisory board. Based on their knowledge and the research that the foundation will fund, we plan to create a destination for newly diagnosed parents to access the most up-to-date information regarding glioma research and options for treatment. Eventually, it is our goal to offer financial assistance to parents without the means to get the best treatment available for their child.
With these ambitious goals, fundraising will be a major concern. So many of you have generously reached out to us personally and for that we are so grateful. Ed and I will be transferring the balance of our Prayers for Maria fund to the foundation. We did not actively seek any funding in the past, but we now begin to do so for the foundation. While individual donations will be greatly appreciated, we will focus predominantly on two areas for fundraising, and can use your help: (1) corporate donations and (2) events.
First, we would appreciate any help in securing corporate donations. The Prayers from Maria Foundation is now established as a 501(c)(3) non-profit corporation, and we have an experienced governance board, as well as a top-notch advisory board in place. We have also established a grant proposal review process (modeled after the National Institute of Health) to make sure we fund only promising research that focuses specifically on childhood tumors.
Secondly, we have witnessed the power of the various events that were held in Maria’s name - from children holding bake sales to bikers riding in poker runs – and we plan to carry on with this type of activity to fund research. We will keep you posted about our upcoming “Kids Curing Kids” campaign, and we encourage you to help us think of events, hold such events, and perhaps volunteer your time.
If you are interested in volunteering, making a donation, or finding out more please visit http://www.prayersfrommaria.org/.
On our website, we post various children affected by some form of glioma. These are beautiful children you’d see next door. As we worked on the site we had to keep updating that section as children continued to pass away on a regular basis. This is the harsh reality of gliomas. We have to stop this from happening.
Thank you again and again for all of your love and support.
Love,Ed and Megan