We have some really exciting news. I have been dying to tell everyone, but until yesterday the details of this news has been under an embargo. So here it is...there has been a major medical breakthrough in the treatment of cavernous angiomas. Researchers at the University of Utah School of Medicine have found that the use of statins (cholestorol lowering drugs such as lipicol and zocor) stop bleeds in mice affected with cavernous angiomas. They are now enrolling patients for a human trial!!! This could mean NO MORE BRAIN SURGERIES!!!!!
Here is a link to the press release announcing this discovery: http://www.angiomaalliance.org/documents/AngiomaAlliancePressRelease18January2009.pdf
This news is beyond our wildest dreams! What we have been praying for could be right here on the horizon--a non surgical treatment for cavernous angiomas!!!! We have applied to the clinical trial, but the researcher has not made a final decision about whether he will permit children in the trial. However, we know this is in God's hands, and we will just continue to pray that He will keep watch over our boys.
So here is where you come in... Angioma Alliance (the patient advocacy and research group we work with) is essential to the success of this clinical trial. We will be identifying possible participants. But we can't do this if we don't have any money and given the state of the economy our donations have seriously dropped. The grants that we count on for a siginificant amount of our yearly income are no longer available. This is just not the time for our organization to go under--far too much is at stake. So what I am asking for is everyone's help. If you can make a donation, great! But we are also looking for fundraising ideas. We are counting on a great turnout at the wine release held in Bakersfield every year, but I am also hoping to figure out another strong fundraising event. We are also going to be raffling off a smart car, the tickets are $50. It would be great if you wanted to buy a ticket or even better if you would be up for selling them!! We hope to sell at least 800 tickets, so we can use all the help we can get! Also, as a part of our annual family conference we will hold a 5k run /walk to benefit Angioma Alliance in San Francisco on April 5th. Any takers???? Here is a link to angioma alliance http://www.angiomaalliance.org/
But most importantly we are asking for your prayers. We hope you will join us in praying for the doctors, the researchers and the patients in this study. And also for God's will for Jake and Sam.
2 comments:
This is amazing! A real full circle moment for your family, I'm sure.
Indeed good news!
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