I* resolve to raise $5,000 towards finding a cure for ECD in 2014. Please feel free to add the ECD Global Alliance to your list of charities for the coming year.
Honestly I feel lucky just to be alive in 2014 but I am hoping with advances in research and faith in a very Big God that there might be many New Years in the future for me and my family.
In 2014 the ECD Global Alliance is planning to award at least two research grants, not to exceed a total of $100,000. Listen...the ECD Global Alliance is not some large impersonal 501(c)(3) organization. We are a small 501 (c)(3) organization run on a shoestring (using volunteers and donations from those suffering with ECD, their families, and friends). So that means if we are going to fund research then we need to help raise the money to make it happen.
DawnMarie and I had planned on raising 5% of the money the organization was going to spend on research in 2014, thinking it was going to be another $50,000 grant this year (that would have been $2,500). Well it turns out we will be giving out $100,000 in research grants in 2014! SO...now we need to raise $5,000 for ECD research. WOW!!!!
Past research grants have gone towards...
2011 - To better define the micro environment inside ECD lesions and to evaluate the possibility of using specific drugs, already available for human usage, as a means to find new therapeutic options for the disease.
2012 - To derive a screening & diagnostic test for ECD that would rely on blood sampling without the need for a biopsy.
2013 - To identify recurrent somatic genetic events in addition to BRAFV600E mutations in patients with ECD. To identify cell of origin in ECD. To identify the optimal targeted therapy in histiocytic disorder patients with mutations activating kinase signaling.
Have you ever wished you could change the world? Well for those suffering from the family of histocyte disorders you can. Current research in this field is changing the life expectancy of those diagnosed with ECD as we speak. Just a few years ago if you were diagnosed with this disease you were given less then 5 years to live, now with current treatment options many people live much longer lives (quality of living though still remains a stubborn issue we need to address).
So in 2014 I am going to work towards finding a cure, one dollar at a time. Interested in joining me?
*Of course "I" means DawnMarie and I, have you decided on a realistic resolution for yourself for 2014? It is time to make a commitment that could change your life!
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| From our family to yours...Happy 2014! |
Honestly I feel lucky just to be alive in 2014 but I am hoping with advances in research and faith in a very Big God that there might be many New Years in the future for me and my family.
In 2014 the ECD Global Alliance is planning to award at least two research grants, not to exceed a total of $100,000. Listen...the ECD Global Alliance is not some large impersonal 501(c)(3) organization. We are a small 501 (c)(3) organization run on a shoestring (using volunteers and donations from those suffering with ECD, their families, and friends). So that means if we are going to fund research then we need to help raise the money to make it happen.
DawnMarie and I had planned on raising 5% of the money the organization was going to spend on research in 2014, thinking it was going to be another $50,000 grant this year (that would have been $2,500). Well it turns out we will be giving out $100,000 in research grants in 2014! SO...now we need to raise $5,000 for ECD research. WOW!!!!
Past research grants have gone towards...
2011 - To better define the micro environment inside ECD lesions and to evaluate the possibility of using specific drugs, already available for human usage, as a means to find new therapeutic options for the disease.
2012 - To derive a screening & diagnostic test for ECD that would rely on blood sampling without the need for a biopsy.
2013 - To identify recurrent somatic genetic events in addition to BRAFV600E mutations in patients with ECD. To identify cell of origin in ECD. To identify the optimal targeted therapy in histiocytic disorder patients with mutations activating kinase signaling.
Have you ever wished you could change the world? Well for those suffering from the family of histocyte disorders you can. Current research in this field is changing the life expectancy of those diagnosed with ECD as we speak. Just a few years ago if you were diagnosed with this disease you were given less then 5 years to live, now with current treatment options many people live much longer lives (quality of living though still remains a stubborn issue we need to address).
So in 2014 I am going to work towards finding a cure, one dollar at a time. Interested in joining me?
Here’s
how you can help…Support
Alyssa, Isabella, and DawnMarie as they run the Spartan Race on May 31, 2014 in Upstate
New York. Donations can be made directly online at the following (link).
*Of course "I" means DawnMarie and I, have you decided on a realistic resolution for yourself for 2014? It is time to make a commitment that could change your life!
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