Hannah is definitely becoming her mother’s daughter. She is becoming fiercely independent, stubborn, and wants to be in control of what she does. Don’t know who that would sound like in our family! LOL Physical therapy (Wednesday): She had a great PT day with Ms. Pam. Even though she was visibly tired from the lack […]
[Continue reading...]Look who got her new shoes! (Okay, orthotics!)
20 Jun by
Surprisingly, Hannah hasn’t really complained much about her new ankle/foot braces. I was expecting a bit of a fight, but nope, it hasn’t happened! She does fight, however, when I put the stride-right size 4-1/2 extra wide shoes over her SureStep orthotics. We are going to have to look out for other shoes because those […]
[Continue reading...]Boston Globe Article – Genzyme plight leaves patients uneasy
18 Jun by
http://www.boston.com/business/healthcare/articles/2009/06/18/genzyme_plight_leaves_patients_uneasy/ The article came out that I was interviewed for yesterday afternoon. I’m so glad to see the neuronopathic Gaucher’s disease is finally getting some awareness, but I wish it was not because of the Genzyme plant shutdown. Again, here are my thoughts on the situation just in case it wasn’t clear in the article. […]
[Continue reading...]Cerezyme Shortage and Genzyme update
17 Jun by
Would you believe I have spent the last three hours talking to various people about this including a reporter from the Boston Globe? Understandably, this is HUGE news in the rare disease world. You have one of the most profitable treatment production companies in the world being shut down. Around 8,000 patients, including Hannah, are […]
[Continue reading...]Where does Genzyme’s Cerezyme shutdown leave us?
17 Jun by
I have no friggin’ clue! I have emailed all of Hannah’s main physicians, and a couple speculate that Hannah should be considered a priority patient because of the severity of her disease and her age, but they have no control or say in the distribution of the Cerezyme that is left. But if they run out of […]
[Continue reading...]Genzyme facility shut down! Not enough Cerezyme for global demand?!
16 Jun by
I already have a message into my contact over at Genzyme. I want to find out how this is going to affect Hannah’s treatment schedule and the other GD23 kids! http://www.google.com/hostednews/ap/article/ALeqM5hYFudhNd3uLPeN-pYJsu1dVT62wwD98RSO5O4 NEW YORK (AP) — Genzyme Corp. said Tuesday it shut down a key production facility as it cleans viral contamination that has been slowing […]
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