The Atypical HUS Foundation

One day several years ago, Linda Burke learned about a disease called aHUS. Her son was ill and that was the diagnosis she was told. Her reaction was to develop her own personal patient engagement. To learn and become informed about an illness is the bedrock of personal patient engagement. She looked around and there was little information of aHUS. She thought that was wrong.

As the disease took it toll on her family,as it does for many of us ,she took upon her self the job of ensuring that no other family should be in the position of not being able to get information for their personal encounter with aHUS. Linda did that by moving from personal to public aHUS patient engagement; and this website is a testimony to that.

Hundreds of people have become members of this website , not the Foundation as that organisation it is not an association, and thousands more have visited this site to take away from it their own opportunity to develop their personal aHUS patient engagement; and if you look at some of the members  names  some have chosen to  move into public aHUS patient engagement themselves.

This website has become encyclopedic and inclusive; but its days appear to be  numbered, and thus  the first era of  public aHUS patient engagement will end with it.

Many new to aHUS now come to it in different circumstances than in the past; not least that these days there is an enormous amount of information about our disease. They do not face what Linda did and so their patient engagement starts from a higher base and they can take so much for granted.

I have, like many others, got to know Linda well over the last few years and got to understand and appreciate her motivation and ability. I am also appreciative that she works with the the aHUS alliance to  continue to contribute to public aHUS patient engagement, but now at a truly global level. 

http://www.ahusallianceaction.org/ is becoming an exciting place  to connect, inform and collaborate for good to come together. A place where public aHUS patient engagement moves to a new era and Linda Burke is a respected and  key part of it.

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.


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.
  
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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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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