Neurofibromatosis - Investing in a Cure
http://youtu.be/g9vgsIvtnHY
Today I found myself on the NF website - looking for the yearly NF walk in Kansas City...(last year we missed it because of sick kiddos). I happened across this video - which features Dr. David Gutmann - Washington University in St. Louis - who just happens to be Ava and Alec's physician! Since Ava's last MRI - many people have asked me about NF and I do think this gives anyone who might be interested some insight as well as some hope. I know I am hopeful for a drug that will "shrink" these crazy tumors....
Ava's last MRI was necessitated by her optic glioma - but they also did an extra MRI scan - which is part of a research project. To me it seems absolutely imperative that we involve ourselves as much as possible whenever possible in any research that might be offered.
Our kiddos are lucky so far...and have minimal issues with their NF1 - but being proactive is going to be important their entire lives.
I am blessed daily to be their momma...and will continue to be diligent in getting them the best care possible...and hopefully being there beside them to dance for joy when a cure is found!!
http://nfcenter.wustl.edu/
http://youtu.be/g9vgsIvtnHY
Today I found myself on the NF website - looking for the yearly NF walk in Kansas City...(last year we missed it because of sick kiddos). I happened across this video - which features Dr. David Gutmann - Washington University in St. Louis - who just happens to be Ava and Alec's physician! Since Ava's last MRI - many people have asked me about NF and I do think this gives anyone who might be interested some insight as well as some hope. I know I am hopeful for a drug that will "shrink" these crazy tumors....
Ava's last MRI was necessitated by her optic glioma - but they also did an extra MRI scan - which is part of a research project. To me it seems absolutely imperative that we involve ourselves as much as possible whenever possible in any research that might be offered.
Our kiddos are lucky so far...and have minimal issues with their NF1 - but being proactive is going to be important their entire lives.
I am blessed daily to be their momma...and will continue to be diligent in getting them the best care possible...and hopefully being there beside them to dance for joy when a cure is found!!
http://nfcenter.wustl.edu/
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