The Atypical HUS Foundation

aHUS Awareness Day, September 24, 2015 Video Project

Calling all Americans!  The first ever aHUS Awareness Day is coming up fast.  It is September 24, 2015.  The world is joining together that day to raise awareness for aHUS.  

The global theme for aHUS Awareness Day is ‘Communication’.   There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS.

The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world) has chosen an Airmail letter as an international symbol of communication.  All of us here at Atypical HUS Foundation would love to have everyone participate in a video project that could be shared globally on September 24th.  What do you need to do?  We would like everyone to email me a picture of themselves along with their name, where they are from, and a message you'd like to tell the world.  These will placed in the Airmail letter template that the aHUS Alliance has agreed upon (see the example below) and put in a video.  Those who are tech savvy and would like to create their own Airmail letter are encouraged to do so to help save time (and email that to me) but anyone who is intimidated or doesn't have the time can just email their picture, name, where they are from, and their message.  Please don't stress about it, there is no right or wrong (except your name and location).  The picture and message could be pretty much anything.  Keep in mind when taking the picture that closeups work best as the picture does not cover the entire slide.  And a long message will be hard to fit.

We encourage those in other countries to participate in whatever projects your country is planning.  But we welcome anyone from our global community to join in this project.  And those whose countries that don't have an official association and don't have their own project to participate in, I strongly encourage you to join the American project.  We want everyone to be included on this special day!

- For those who want to create their own Airmail letter from the template, send me an email and I will send you the template and instructions on how to do it.  Don't worry, if you decide you can't do it, just send me your picture and info and I'll take care of it.

After putting your Airmail letter together I will email it to you so you can share it on your Facebook page.  And of course we will want you to share the video so the whole world can see it!

I will need to have your submissions by 9/12 to give me time to put this together.  The earlier you can get them to me the better!

Here is my email address:


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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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