The Atypical HUS Foundation

Kerry Waters's Comments

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At 9:29am on April 14, 2017, Linda Burke said…

Hi Kerry,

Thanks for your warm welcome to Donnan - it's much appreciated.  Hope things are going well for you and your family.

At 8:19pm on March 31, 2014, Cheryl Biermann said…

Kerry, welcome.  As you can see, you are in good hands at CHOA...and here as well.  We look forward to getti g to know you.

At 9:35am on March 31, 2014, Phyllis Ann Talbot said…

Kerry - same here - sent you a note on Facebook as well - just yell if you want to talk - I'll actually be at Egleston with Hyde Thursday morning for clinic if that's where ya'll are - happy to stop by and say hey!

At 8:14am on March 31, 2014, Melissa Hearn said…
Hi Kerry,
Sorry to hear about your son. My son also has AHUS and we are currently in Atlanta. We are moving at the end of the school year.

I also work for CHOA in the non clinical setting. What hospital are you at? Please message me of there's anything you need. I would be happy to visit or call if you want to talk, have questions, etc.

Thanks,
Melissa Hearn
At 11:01am on March 30, 2014, Linda Burke said…

Welcome to the website, I'm so sorry to hear that your son had his aHUS arise while at college but am glad to learn that Soliris therapy will begin soon.  CHOA is a great place, and our Director Phyllis Talbot is in your area (Children's Hospital of Atlanta - Egleston ).

Please check out the informational videos about the disease (U of Iowa doctors, in particular), the aHUS Bootcamp, and the Soliris forum at http://atypicalhus.ning.com/forum/topics/soliris-1  . 

You'll find the tab 'aHUS Materials & Info' lists multiple resources, some which are valuable to share with friends and family who want to understand this rare disease.  We welcome your comments, questions and participation.

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.
  
• • • • • • • • • • • •
  
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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