The Foundation for Children with Atypical HUS

 

Zach's 10th b-day was Jan 18 he passed away three days later on the 21st. due the flu.

Never diagnosed!  We will have a diagnosis for Ben someday. That is my life long goal until it is achieved! I owe it to Zach.

 

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Comment by NATALIE WALLACE on January 27, 2011 at 10:14am
God Bless you. Thank you for your kind words. Yes, rejoice in the memories. I just hope we find out the factor Ben is missing. Crazy how new this aHUS is to the medical world. Thank you again.
Comment by Kerri Grey on January 27, 2011 at 5:06am
My thoughts are with you at this hard time... i hope you can find comfort in the joy Zach bought to you and your family in the short time he was here on earth before he became an angel looking down from heaven and keeping you safe!!!
Comment by Cheryl Biermann on January 25, 2011 at 11:43am
Remebering you this week in your pain and bittersweet memories.  Zack must be so proud of his family to be doing such wonderful work in his memory.  I know how hard this time is, and I pray you find the answer the the abrupt end of Zack's life.  God bless you.
Comment by NATALIE WALLACE on January 23, 2011 at 11:37pm
Thank you Linda. You are so kind. Hope you and your family are doing well.
Comment by Linda Burke on January 23, 2011 at 9:58pm

Your Zach made a wonderful difference in your family's life, and the foundation you began in his name continues a legacy of caring and hope for others.  Anne Graftiaux's sweet daughter Marie, and my Hunter, join Zach in being remembered by their Moms each day with love.  Sending a hug, Linda

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.

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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 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.



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