The Foundation for Children with Atypical HUS

 I would like to take the time to wish all of the Atypical HUS families a very Merry Christmas and a healthy happy new year! I hope that 2012 will be better for all who have been touched by this disease, including myself. I may not have a job yet and I certainly may not have a kidney just yet, but I am hoping that 2012 will be bringing me better things to look forward to. One thing that will HOPEFULLY be occurring is a potential trip to California to attend a renal teen prom sponsored by the Renal Support Network (RSN), where I will be able to meet some hollywood celebrities and get my face on tv, to hopefully get out there that I am in need of a kidney transplant.  I am just awaiting to hear that I have a slot for dialysis, then everything can be put into place. I have been traveling a lot; enjoying it while I can, before I end up landing a full time job.

 

Work for me has gotten a little better; I am doing what I am to be doing for the time being at the doggie daycare and was granted a pay raise, so things are a bit better for me, until I can land an LVT job.

 

Merry Christmas and Happy New Year to all Atypical HUS families, from the Frysz family to your families.

 

 

 

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Comment by Jessica Olivia Frysz on December 31, 2011 at 11:06am

Thank You Selma! Yes, LOADS to look forward to in 2012, lots of patience has to be earned unfortunately, but I am doing what I can at the moment.

Comment by Selma Bennett on December 29, 2011 at 9:00pm

Wow! Lots of good things to look forward to in 2012! Even if your days have gone to the dogs :)  Happy New Year to you and your family!

Comment by Jessica Olivia Frysz on December 27, 2011 at 11:16pm

Cheryl: I won't know how much of a raise I received until I get my check, but it was nice to hear that I am doing well.

Comment by Cheryl Biermann on December 27, 2011 at 1:00pm

 Great news Jess!  The payraise has to be nice too.  Thanks for the update.

 

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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