The Foundation for Children with Atypical HUS

Merry Christmas everyone!

Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones.  So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season.  If any of you find yourself in a bad health situation, please let us know and we will flood you  with prayers and messages!

 

God bless our aHUS family and let us all enjoy the season of love.

Views: 32

Comment

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

Comment by Dana M Simone on December 25, 2011 at 4:35pm

Merry Christmas, Jessica...please believe! Your miracle is coming!

 

Comment by Jessica Olivia Frysz on December 25, 2011 at 1:50pm

Thank you that's very thoughtful. I would appreciate some prayers for myself; I am not in a bad health situation, but am seeking a kidney donor, so that I can finally be transplantaed. I also ask for prayers that I find a job soon.

Comment by Phyllis Ann Talbot on December 18, 2011 at 11:56am

Thanks Cheryl and Dana for the messages!  I couldn't agree more!

Comment by Dana M Simone on December 17, 2011 at 8:56pm

Thanks for the great message, Cheryl.  So many of us have experienced miracles this past year, and we offer our thanks and praise to God...praying for Christmas miracles for those in our aHUS family still fighting the battle. God is good...stay strong and keep the faith.  Merry Christmas everyone!

 

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.

************************

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.



Badge

Loading…

Get Badge

© 2012   Created by ALPHA MARKETING.   Powered by

Badges  |  Report an Issue  |  Terms of Service