The Foundation for Children with Atypical HUS

Gene Billingsley Sr.
  • Male
  • Lafitte, LA
  • United States
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Gene Billingsley Sr.'s Page

Latest Activity

Gene Billingsley Sr. left a comment for Gene Billingsley
"I'm just proud to be your Dad and Christian's Faw."
Oct 23, 2009
Gene Billingsley left a comment for Gene Billingsley Sr.
"Hi Faw!! I'm so excited to see you on the website. We love you!"
Oct 22, 2009
Cheryl Biermann left a comment for Gene Billingsley Sr.
"Welcome Mr. Billingsley! It's good to have you and your family here, this interactive site is to help us support one another as well as keeping up with our kiddos and getting the latest information available. Thank you, and we hope that we will…"
Oct 22, 2009
Gene Billingsley Sr. is now a member of The Foundation for Children with Atypical HUS
Oct 22, 2009

Profile Information

Birthday
December 2
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:
Question Does Not Apply To My Situation

Comment Wall (2 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 7:56pm on October 22, 2009, Gene Billingsley said…
Hi Faw!! I'm so excited to see you on the website. We love you!
At 5:11pm on October 22, 2009, Cheryl Biermann said…
Welcome Mr. Billingsley! It's good to have you and your family here, this interactive site is to help us support one another as well as keeping up with our kiddos and getting the latest information available. Thank you, and we hope that we will be able to answer any quesitons you may have and help you understand this very complex disease.
 
 
 

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 "aHUS Bootcamp" and "About aHUS" tabs 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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