I actually was looking for an address to donate to the HUS foundation--I have a grandson that has HUS
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Bonnie L. Randall
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Linda Burke left a comment for Bonnie L. Randall
Hi Bonnie,
Thanks for your note asking about an address for the Foundation. I'm working on a new tab "About the Foundation" and the address is listed there. I appreciate your comment which pointed out a need...now I just need to build…
Bonnie L. Randall left a comment for Cheryl Biermann
Thank you --Yes I am really pround of his brother Joey--he takes thing very seriously
and is constantly study things over the internet to help. Yes Kelley went back for more soliris on Friday---he looks so much better now. I'm praying it will…
Cheryl Biermann left a comment for Bonnie L. Randall
Ah, you must be so relieved, I know how out of control the grandparents always felt; I can't tell you how relieved all of us were to hear Kelley finally was approved for Soliris. You must be so proud of his older brother Joey, I have been…
Bonnie L. Randall left a comment for Cheryl Biermann
Thanks my grandson is Kelley Krug--I see his father and brother use this site also. He
went back for soliris today at Iowa City---it is his 3rd dose---I pray he continues to do good.
Cheryl Biermann left a comment for Bonnie L. Randall
Welcome to our site! We hope to hear from you soon.
Linda Burke left a comment for Bonnie L. Randall
Hi Bonnie,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, we look forward to hearing about your interest in this rare disorder and hope you find helpful information here.
Profile Information
- Birthday
- July 14
- 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 child ( or myself as a patient) is best described as:
- Question Does Not Apply To My Situation
Comment Wall (4 comments)
- At 9:37pm on September 20, 2010,
Linda Burke said…
- Hi Bonnie,
Thanks for your note asking about an address for the Foundation. I'm working on a new tab "About the Foundation" and the address is listed there. I appreciate your comment which pointed out a need...now I just need to build on my start and 'beautify' with graphics and plus details. ;-D
- At 12:03am on July 6, 2010,
Cheryl Biermann said…
- Ah, you must be so relieved, I know how out of control the grandparents always felt; I can't tell you how relieved all of us were to hear Kelley finally was approved for Soliris. You must be so proud of his older brother Joey, I have been touched at how knowlegeable and involved he has been.
- At 12:20pm on June 26, 2010,
Cheryl Biermann said…
- Welcome to our site! We hope to hear from you soon.
- At 10:27pm on June 23, 2010,
Linda Burke said…
- Hi Bonnie,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, we look forward to hearing about your interest in this rare disorder and hope you find helpful information here.
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 "About aHUS" tab 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...
• • • • • • • • • • • •
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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