Two years ago tomorrow, our
feisty boy with a wonderful deep soul died from a disgusting and ugly cancerous
tumor that invaded his brain…
Some days it feels like
Carson has been dead for10 years and some days I think, he is going to walk
through the door any minute…
But the truth is, we searched
the world for a cure that is yet to be discovered and Carson died young and
fearless insisting his brain be studied with the hope of helping the next kid
whose vibrant growing body is invaded by disgusting cancer…
We promised him we would
honor his request and so, the search continues…
The Carson Leslie Foundation
has raised several hundred thousand dollars for research PLUS our annual, “A
Sunny Place for Shady People” event is this Friday, January 13! We have already exceeded our goals! More people have registered than we ever expected and
underwriting has blown us away!
PLUS, this week we have made
significant progress figuring out the A+ study of Carson’s brain. And, we have figured out how to
incentivize the dollars we raise!
(Much more on that later!!)
Below is a correspondence I
had a few months ago:
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To refresh your memory,
I am Annette Leslie the mother of Carson Leslie who died from complications of
medulloblastoma on January 12, 2010.
It was because of his
insistence you received some of the medullo tumors that invaded his brilliant
brain on January 13, 2010. You were kind enough to communicate with me early on
in your study. Well as time has gone on and I continue work at healing
from the death of my son, I have found that it is through FIGHTING back,
for the next kid who is diagnosed with disgusting cancer helps me to heal the
most.
As a result of the
fight, I have the privilege of serving on the CPRIT pediatric cancer advisory
committee. Recently I attended a
CPRIT conference in Austin. At that conference I was sitting in Dr.
Parson's presentation of whole exome sequencing & other methods of genomic
analysis to GBM, which included medulloblastoma. As I listened trying to
understand what Dr. Parson’s was talking about, your name popped up. And I
remembered it was you who did the study on the tumors in Carson's brain right
after he died. Then I almost fell out of my chair thinking the study they are
talking about might be those tumors from my boy.
I would like to confirm and I anxiously
wait to hear from you...and thank you for your careful work...annette
Dear Annette,
Thank you so much for your continued support of pediatric brain
tumor research, and I am so happy to know that you are serving on the CPRIT
pediatric advisory committee. By working together, we will bring
medulloblastoma under control.
And, yes, I am collaborating with Dr. Parson on multiple
projects. We have applied and been awarded several research grants together. I
believe you have known that Dr. Parson has made several seminal discoveries on
GBM as well as on medulloblastoma. Most of the data that Dr. Parson published
so far (in Nature and Science) was generated from his study in John Hopkins.
We are, however, rapidly moving to the next (and I believe more
important) phase of studies. 1) to
validate his previous findings in more tumors, 2) to conduct functional
confirmation of the important genes, and 3) to test new drugs targeting the
candidate genes. I can assure you that the tumor and the normal tissue
from Carson are extremely important for all these studies. This is because most
of the other tumors we have collected do not have matched normal tissue to
compare.
One more thing that I wish to share with you is that we have
identified a set of genes that may play critical roles in medulloblastoma
invasion and metastasis. We are using the tumor tissues from Carson to confirm
our findings, and our long-term goal is to develop new therapies that will
block this deadly process.
Best regards,
Xiao-Nan
THIS FUELS US…there was not an ounce of surrender in our
boy…fight’s on…
