The Foundation for Children with Atypical HUS

Gina Elliott
Gina Elliott
  • Female
  • Keller, TX
  • United States
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Gina Elliott's Friends

  • Cheryl Biermann
  • Svetlana Finley
 

Gina Elliott's Page

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Cheryl Biermann left a comment for Gina Elliott
Welcome to our interactive site, feel free to join in any of the discussions/forums and if you are new to this, please take note of the drop down tabs and I think the Parent's Perspective will be a good place to start, it's kind of like to…
Feb 5, 2010
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Gina Elliott updated their profile Feb 3, 2010
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Gina Elliott is now friends with Cheryl Biermann and Svetlana Finley Jan 5, 2010
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Svetlana Finley left a comment for Gina Elliott
Hi, Gina Welcome here!!! Can't wait to hear your story and get to know your family.
Jan 3, 2010
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Linda Burke left a comment for Gina Elliott
Hi Gina, Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we share information, inspiration, and insight about this rare disorder. If you're seeking information about aHUS, please check out medical…
Jan 3, 2010
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Gina Elliott is now a member of The Foundation for Children with Atypical HUS Jan 3, 2010

Profile Information

Birthday
January 30
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Tested but Results are Inconclusive

Comment Wall (3 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 11:27pm on February 4, 2010, Cheryl BiermannCheryl Biermann said…
Welcome to our interactive site, feel free to join in any of the discussions/forums and if you are new to this, please take note of the drop down tabs and I think the Parent's Perspective will be a good place to start, it's kind of like to ABC's of Atypical HUS. We look forward to hearing your story. We are glad you found us.
At 12:33am on January 3, 2010, Svetlana FinleySvetlana Finley said…
Hi, Gina
Welcome here!!! Can't wait to hear your story and get to know your family.
At 10:29pm on January 2, 2010, Linda BurkeLinda Burke said…
Hi Gina,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we share information, inspiration, and insight about this rare disorder. If you're seeking information about aHUS, please check out medical basics of atypical HUS using the tab "About aHUS". This online community offers support from other aHUS patients and families, so feel free to share your aHUS interest areas and to explore the various Forum entries. We look forward to your participation.
 
 
 

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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