The Foundation for Children with Atypical HUS

Hi all, I am looking at doing a family fun day fundraiser in October and i want the funds to go to the foundation for children with ahus and to the nephrology department at the childrens hospital here in melbourne. To register with consumer affairs i need to get a letter from the foundation for children with ahus to say that they agree to hope 4 kids with ahus ( What we are calling our fundraiser) to raise funds for them. Does anyone know who i need to contact for this so i can start getting the ball rolling. Thanks

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Comment by Kerri Grey on February 23, 2010 at 3:26pm
Thanks cheryl, i got my brother in law to have a look at it and he found the email address the right way and we assumed it would be the right one cause it was so close and in the same area so i sent an email to that one hoping it was the right one but you have jsut confirmed that it was the right one, thanks heaps for that
Comment by Cheryl Biermann on February 23, 2010 at 8:29am
bbiermann@premier-ks.com sometimes I forget the 2 bs or the dash or some other small thing.
Comment by Cheryl Biermann on February 23, 2010 at 8:27am
oops sorry, I recheck it and get right back to you!
Comment by Linda Burke on February 22, 2010 at 9:04pm
Hi Kerri,
This interactive website is the linking hub for patients, families, friends and researchers interested in aHUS issues and was only launched this past summer - thanks to all of you Members who truly form the heart of this site! As the social network arm of the Foundation for Children with Atypical HUS, it provides direct links to other people in the aHUS community but all non-social aspects (research and fundraising, for example) are best addressed by Bill and Cheryl Biermann, the founders of The Foundation for Children with Atypical HUS. They have labored long and hard, at the forefront of the battle to raise awareness and funds for aHUS, and they've done a fabulous job!
Bill can provide you not only with the legal documents indicating the Foundation's non-profit, charitable organization status but also with a wealth of information that will assist your fundraising efforts.
It's wonderful that 'Hope 4 Kids with aHUS' is getting underway - I wish you much success and know that the Biermanns will support your efforts, guiding the process when you need direction, and offering help in any way they can. Best wishes, Linda
Comment by Kerri Grey on February 22, 2010 at 8:47pm
Hi Cheryl thankyou so much for all your information. I have tried to email Bill wih this email address and and it keeps coming back to me saying there is errors with it
Comment by Cheryl Biermann on February 22, 2010 at 6:56pm
Kerri, please get in touch with Bill Biermann, President he is on the site and his email is bbiermann@premier-pks.com. He'll reply if he receives an e mail and I'll let him know to check the site when he gets home.
Comment by Cheryl Biermann on February 22, 2010 at 6:50pm
Kerri, I think I mixed up Ashley with another child on my last of several emails to you, sooo sorry! Anyway, friend requests come directly to my email and then when I go to the site I just hit approve or accept. I think I go to my page,

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.
  
• • • • • • • • • • • •
  
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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