Lisa G
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Lisa G's Discussions

How long are your infusions?

Started this discussion. Last reply by Donna Lee Jan 11. 1 Reply

My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.Thank you all for…Continue

Please sign my Petition

Started this discussion. Last reply by Lisa G Oct 19, 2015. 2 Replies

I just started the petition "HEALTH CANADA: Approve Sebelipase Alfa so that my daughters life can be saved." and wanted to see if you could help by adding your name.My goal is to reach 100 signatures…Continue

Canada

Started this discussion. Last reply by Lisa G Jan 18. 2 Replies

Hello Everyone,I am wondering how many people on here are from Canada. We are trying to find out whether or not our daughter is the only child in Canada with LAL D.Thank youContinue

 

Lisa G's Page

Latest Activity

Donna Lee replied to Lisa G's discussion How long are your infusions?
"Hi Lisa- Please forgive the delayed response. We are updating this site and your question was not easy to find!  By now you probably already know that Kanuma infusions are given over about 2 hours.  However, depending on the infusion…"
Jan 11
Lisa G posted a discussion

How long are your infusions?

My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.Thank you all for your help!!Kindest regards,LisaSee More
Oct 12, 2016
Lisa G replied to Rebecca Trendy's discussion News Story
"That's awesome Rebecca!! The video is great!! I shared it!"
May 29, 2016
Nicole and Lisa G are now friends
Mar 15, 2016
Lisa G and Sara Salinas are now friends
Mar 14, 2016
Lisa G replied to Rebecca Trendy's discussion Introducing my family
"That is great that there is not a lot of side effects! Thank you Holly, I will be in touch!"
Mar 1, 2016
Lisa G replied to Rebecca Trendy's discussion Introducing my family
"That is great that your son has started treatment! How is he feeling with it? I will write down some questions and send them to you if that's ok? Thank you very much for your help, I appreciate it."
Feb 29, 2016
Rebecca Trendy liked Lisa G's photo
Feb 29, 2016
Lisa G updated their profile
Feb 28, 2016
Lisa G replied to Rebecca Trendy's discussion Introducing my family
"Apparently it didn't email me with your response. Thank you Rebecca, I really appreciate it! Teaghan's specialists are in contact with the manufacturer of Kanuma, but still have no expected date yet or trial yet. The doctor said that I…"
Feb 28, 2016
Lisa G commented on Lisa G's photo
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"This is the shirt that I had made for my daughter for Rare Disease Day" tomorrow!"
Feb 28, 2016
Lisa G posted a photo
Feb 28, 2016
Lisa G left a comment for Lisa G
"Thank you Rebecca, I really appreciate it! : )"
Feb 28, 2016
Rebecca Trendy left a comment for Lisa G
"I signed it, and shared it on Facebook."
Feb 27, 2016
Lisa G left a comment for Lisa G
"Thank you for your ongoing help and support Brett, I really appreciate it. I contacted one of our local radio stations and they posted our petition on their Facebook page and our local tv station has messaged me back to possible do a story. I am…"
Feb 27, 2016
Brett Billmeyer left a comment for Lisa G
"Hi Lisa, You may have already received this information, but if not, from what I understand they Alexion is still working with the Canadian government on getting Kanuma approved in Canada.  The are and will continue to look for patients and…"
Feb 27, 2016

Profile Information

What brings you to LAL Solace?
Education, Support, Sharing, Research, All
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Child

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Comment Wall (6 comments)

At 9:00pm on November 3, 2015, c.a.cowan said…

Lisa...can you tell me why my contacts cannot access your petition to sign?  So many have replied that there is no signing option.  Have you had anyone report the same to you? It seems the petition is stuck at 194 with no further additions for days.  I would like to promote it more, but would like this problem worked out before doing so.

thank you

c.cowan

At 10:47pm on February 7, 2016, Lisa G said…
Hi there, apparently I missed your response. Please let me know if the link does not work. https://www.change.org/p/health-canada-approve-sebelipase-alfa-so-that-my-daughters-life-can-be-saved

Thank you for your help, it is greatly appreciated.
At 1:29pm on February 27, 2016, Brett Billmeyer said…

Hi Lisa,

You may have already received this information, but if not, from what I understand they Alexion is still working with the Canadian government on getting Kanuma approved in Canada.  The are and will continue to look for patients and families to speak about Kanuma and how it has affected patients in Canada.  I hope to hear more about the process soon.  As of now, I do not know what the timeline looks like.  

At 7:36pm on February 27, 2016, Lisa G said…
Thank you for your ongoing help and support Brett, I really appreciate it.
I contacted one of our local radio stations and they posted our petition on their Facebook page and our local tv station has messaged me back to possible do a story. I am doing everything in my power to get this approved faster and bring awareness.
At 9:47pm on February 27, 2016, Rebecca Trendy said…
I signed it, and shared it on Facebook.
At 9:26am on February 28, 2016, Lisa G said…
Thank you Rebecca, I really appreciate it! : )

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