The Atypical HUS Foundation

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  • Raleigh, NC
  • United States
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  • Cheryl Biermann
  • Svetlana Finley
  • Steve Greene


Profile Information

Do you have a friend or family member diagnosed with aHUS?
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
My membership request involves business interests as I seek additional aHUS information for business applications.
My child ( or myself as a patient) is best described as:
Question Does Not Apply To My Situation


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How to Get and Use Your aHUS Badge

Hi All,

I have been getting some feedback that people are having issues getting their Badge to work. So, I have put together a pdf with instructions on making and using them. Just click on the link below.

I hope you all get out and use them. They are great for letting people know about the site.




Posted on August 22, 2009 at 8:49pm

ALPHA Marketing and aHUS

Our team at ALPHA was very fortunate to be able to create this social network for the families and communities dealing with atypical HUS. We hope you all find it a useful place to share, get advice and support, increase awareness, and raise money to help these families.

If you or someone you know is looking for help setting up their own social network, please let us know. We would love to help.



Christy White,

Creative… Continue

Posted on May 9, 2009 at 11:30am

Comment Wall (7 comments)

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Join The Atypical HUS Foundation

At 8:26pm on December 17, 2010, Cheryl Biermann said…


I do not believe I've ever thanked Alpha Marketing for this outstanding site, a serious over-site.  If, I ever hear of anyone needing a site, you can be sure Alpha Marketing will get a plug from me!





At 4:30pm on November 28, 2010, Nicolas said…
Christy thank you for creating this site.
It takes an international scale.
At 4:34pm on January 1, 2010, Linda Burke said…
Happy New Year, Christy!
One of our biggest blessings this year has been the creation of this website for aHUS patients and families - thank you for all your hard work involved in creating this site, and the whole Alpha Marketing team involed in this amazing endeavor!
At 12:23pm on December 16, 2009, Phyllis Ann Talbot said…
Thanks Christy - I'll check with him - I know the file size is less then 100 MB - he thinks he had it figured out - I'll yell if it doesnt work tonight n- hope it does - came out REALLY well I think.
At 8:13pm on December 15, 2009, Phyllis Ann Talbot said…
Christy - have a technical question - I have an amazing video that a friend of my brother's did for us for our Hike coming up in the spring. He tried to upoad the video tonight to this webpage and thought it was working but we got an e-mail saying that the upload did not complete due to a conversion error? The title of the video is Hike4Hyde? Any help would be greatly appreciated.
At 11:57pm on July 16, 2009, Linda Burke said…
As we look over the past month since this aHUS interactive website has launched, I am amazed at how your fine work has positively affected the world of our aHUS families. By connecting us to share information and support, we can explore common experiences and gain insight into treatment options for our loved ones. Additionally, we can now actively help our child's doctors to connect with other medical personnel who have experience with specific topics dealing with aHUS issues.
I know other families and friends join me in extending our deepest thanks for creating this website - it rocks!
At 8:50pm on July 15, 2009, Vicki Ravely said…
Thank you Christy and ll else involved with this project. We distant families are grateful to see photos of other A-typical HUS patient's and their families. We don't know a single other patient, except a little information through our wonderful doctor's at Children's Hospital in Seattle. Vicki Ravely and family (Paul's family)


To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


The Atypical HUS Foundation 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.

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.


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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact with your request and details.


 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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