The Foundation for Children with Atypical HUS

good stuff

we are getting read for the second annual "tuff hat softball tournement" cause we all wear tuff hats when we have a loved one battling ahus.. we are getting so stoked this will be the firat time we will be able to donate all monies to research.. thanks to all of my girls helping me put it on.. also lil miss is doing rather well except mommy has walking pnemonia i found out today and i got sick from lil miss so i will be bringing her in on monday.. i thought i just had a nasty chest cold but turns out pnemonia.. and lil miss is now showing same symptoms as me.. but she is on so many bronchial dialators and cortico steroids that she seems to be doing well. also we are staying very busy she started kindergarten.. she is now a big girl.. also we are looking forward to the solaris study she is the perfect canidate for this and we want her to be able to help others.. but the only crappy part is that she will have to relapse i really dont know much linda and cheryl know more than me we dont see our doc till the 22nd....well i will post more soon.. big hugs to all the ahus parents out there and the kiddos who battle this.. may god bless the ahus community

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Comment by Linda Burke on September 11, 2010 at 11:30pm
Woowheee, girl- walking pneumonia, yikes.....even the best caregivers need to take care of themselves, you know! Tuff Hat Mamma - just Tweeted your coed softball event, hope you hit this fundraiser right out of the park!
Comment by Amy Swarbrick on September 11, 2010 at 11:16pm
Get better soon! Also thanks to you and all the families that put on these wonderful fundraisers. You all have put in so much time and work into these things. THANK YOU! Hopefully one day we will all have fundraisers going in our areas (mine included).
Comment by Cheryl Biermann on September 11, 2010 at 11:12pm
Take care of yourself, get out that chicken soup and take it easy.

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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