The Foundation for Children with Atypical HUS

Sarah Brewer
  • Female
  • Ephrata, WA
  • United States
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  • Cheryle Brewer
  • Jodi Kayler
 

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Jonathan Aguallo commented on Sarah Brewer's video
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Spokane hospital offers unique treatment for rare disease

"what a great story!!!!"
Feb 4
Linda Burke commented on Sarah Brewer's video
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Spokane hospital offers unique treatment for rare disease

"By sharing your journey with aHUS, your family story offers information and support to others.....thank you !"
Jan 30
Cheryle Brewer and Sarah Brewer are now friends
Jan 30
Sarah Brewer and Jodi Kayler are now friends
Jan 30
Sarah Brewer updated their profile
Jan 30
Sarah Brewer commented on Sarah Brewer's video
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Spokane hospital offers unique treatment for rare disease

"Another news station, KXLY, did another version of the story here: www.kxly.com/news/30317676/detail.html but I like one just a bit better. I'm so exciting to see Sacred Heart Hospital, Soliris and AHUS getting some coverage!…"
Jan 30
Sarah Brewer posted a video
Jan 30
3 Comments
Sarah Brewer replied to Linda Burke's discussion Soliris
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Jan 30
Sarah Brewer replied to Linda Burke's discussion Soliris
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Jan 30
Sarah Brewer replied to Linda Burke's discussion Soliris
"Our local news did a story on my nephew Isaiah and the family as well as the study on Soliris http://www.krem.com/news/health/Unique-treatment-for-rare-disease-saves-young-boys-life-at-a-Spokane-hospital--138091153.html"
Jan 30
Sarah Brewer shared a profile on Facebook
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Sarah Brewer

Jan 30
Sarah Brewer posted a status
"Isaiah and my brother's family made the news for their participation in the Soliris study! http://ning.it/xohmQy"
Jan 30
0 Comments
Cheryl Biermann commented on Sarah Brewer's blog post Today, I love the FDA!!!
"Isaiah is adorable!  What wonderful news he is responding so well.  I said the same thing on the 23rd about bureaucracy, I think you hit on a common thread!"
Sep 27, 2011
Sarah Brewer posted a blog post

Today, I love the FDA!!!

Say what you will about bureaucracy, today, I am happy with the FDA! Smiles abounded and a few tears were shed when my family found out that the FDA had finally approved Eculizamab for the treatment of aHUS. My nephew, Isaiah has responded AMAZINGLY well to his biweekly Soliris infusions. My brother shared his personal…See More
Sep 26, 2011
1 Comment
Cheryl Biermann left a comment for Sarah Brewer
"Welcome to our site! "
May 20, 2011
Linda Burke left a comment for Sarah Brewer
"Hi Sarah- Thanks for joining in our aHUS discussions, in support of your nephew Isaiah.  We welcome you and encourage your participation."
May 19, 2011

Profile Information

Birthday
May 13
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results, Tested but Results are Inconclusive

Sarah Brewer's Videos

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Sarah Brewer's Blog

Today, I love the FDA!!!

Say what you will about bureaucracy, today, I am happy with the FDA! Smiles abounded and a few tears were shed when my family found out that the FDA had finally approved Eculizamab for the treatment of aHUS. My nephew, Isaiah has responded AMAZINGLY well to his biweekly Soliris infusions.

 

My brother shared his…

Continue

Posted on September 26, 2011 at 5:02pm — 1 Comment

Comment Wall (2 comments)

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

At 5:16pm on May 20, 2011, Cheryl Biermann said…
Welcome to our site! 
At 10:14pm on May 19, 2011, Linda Burke said…

Hi Sarah-

Thanks for joining in our aHUS discussions, in support of your nephew Isaiah.  We welcome you and encourage your participation.

 
 
 

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.



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