For those of you who had or are having surgery

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For those of you who had or are having surgery

Postby Connie Lee » Fri May 06, 2011 7:36 pm

Hi all,

This is for anyone who has recently had or who will be having surgery. Please consider participating in the Angioma Alliance DNA/Tissue Bank and Clinical Database. It involves a time commitment (about 2-3 hours the first year and about 30 minutes every year after for as long as you are willing to participate), but is invaluable in our search for a cure for this illness. Angioma Alliance has become the main source of cavernous angioma tissue for researchers, and we are always in need of more participants.

To get more information and to express your interest, please visit www.angioma.org/dna. At the bottom of that page, there is a form that you can complete to let us know you are interested.

Thanks so much for your help!
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
Posts: 417
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: For those of you who had or are having surgery

Postby heidihi » Thu Aug 18, 2011 4:42 pm

I have completed and submitted this form but have not heard back.... I know someone else mentioned the same thing... Is this still going on? Thanx
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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heidihi
 
Posts: 222
Joined: Tue Sep 28, 2010 3:56 am

Re: For those of you who had or are having surgery

Postby Connie Lee » Fri Aug 19, 2011 12:35 am

Hi Heidi - I checked with Amy Akers and she said that she emailed a consent form to you the day after you submitted your form. I've asked her to send another. Can you please add amy.akers@angioma.org to your contacts list so that it doesn't go to your junk folder. Ethically, if we don't hear back from someone after sending a consent form, we're not supposed to follow up. We don't want to appear to be pressuring anyone to sign the consent and participate. Amy's just back from 6 weeks of maternity leave - you picked a good day to ask your question!
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 417
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: For those of you who had or are having surgery

Postby heidihi » Fri Aug 19, 2011 3:50 am

Thanx Connie! I didn't realize that could be the case, will add her now!
Heidi
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
User avatar
heidihi
 
Posts: 222
Joined: Tue Sep 28, 2010 3:56 am

Re: For those of you who had or are having surgery

Postby Joanie » Wed Oct 30, 2013 5:13 pm

Hi, Connie,

We are meeting with the neuro surgeon next Tuesday, and according to the neurologist, surgery to remove my CM will be necessary. Is this program still on-going? If so, I want to let the Dr. know too.

Thanks, Joanie
Joanie
 
Posts: 16
Joined: Thu Oct 03, 2013 10:43 am
Location: Southwest Florida

Re: For those of you who had or are having surgery

Postby Connie Lee » Wed Oct 30, 2013 8:44 pm

Hi Joanie - yes, it is very much ongoing. If you could please go to www.angioma.og/dna and fill out the form at the bottom, I'll let Amy Akers, our scientist know how soon your surgery is coming so she can contact you immediately. Thanks for thinking of this!
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 417
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia


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