Cerebrospinal fluid β-glucocerebrosidase activity is reduced in dementia with lewy bodies Section of Neurology, University of Perugia, Italy IRCCS Fondazione S. Lucia, Rome, Italy Section of Applied Biochemistry, University of Perugia, Italy Dept. of Nephrology, Foligno S.Giovanni Battista Hospital, Perugia, Italy Received 25 February 2009; accepted 7 March 2009. Available online 20 March 2009. Abstract […]
[Continue reading...]DNA Sequencing Results Monday?
30 Mar by
Hannah’s DNA was sent off for sequencing on February 7th. We were told 6 weeks. Two weeks ago, our doctor’s research coordinator was told they would be available last Monday. When she checked on them last week, the genetics counselors were “out of town” and to check back this Monday, today! I’m scared to death. […]
[Continue reading...]Thank you, Senator John Cornyn!
28 Mar by
It has been EATING at me that we got declined for SSI because of our income (which is not that great for a family of five!). So, you know me, I decided to take action! It is just WRONG that people who need assistance don’t receive it, especially if they have been paying into the […]
[Continue reading...]Hannah’s medical break is almost over
28 Mar by
With the exception of Hannah’s bi-weekly cerezyme treatments, monthly visits to her pediatrician to keep tabs on her GD, and therapy sessions one to two times a week, Hannah hasn’t seen that many “white coats” in the past few months since we got the diagnosis. That is going to change in a couple of weeks […]
[Continue reading...]Pea-flavored formula anyone?
27 Mar by
Yesterday, I worked on yo-baby yogurt with Hannah for her two attempts at spoon feeding. Though she didn’t cry or scream, she did NOT like it very much. Though, I was able to finally get in about 1/2 the banana flavor in the morning and 1/3 of the vanilla in the evening. It was a […]
[Continue reading...]Chic-Fil-A fundraiser – April 7th!
27 Mar by
My wonderful neighbor coordinator a fundraiser with our local Chic-Fil-A, and they have agreed to donate 20% of all proceeds that night to help us fight for Hannah’s life. I went by there with Hannah and Abby yesterday, and I was able to meet Mica, the marketing director, who is organizing everything on that end. […]
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