The Foundation for Children with Atypical HUS

Katie Johnson
  • Female
  • Onalaska, WI
  • United States
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Katie Johnson's Friends

  • Wendy Flinn
  • Donna Kolp
  • Phyllis Ann Talbot
 

Katie Johnson's Page

Latest Activity

Katie Johnson is attending Bill Biermann's event

2011 Parent Conference at University of Iowa

October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" .   This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th     Early Arrival  7:00pm  Meet and Greet                           Dinner sponsored by the FoundationSaturday, Oct 8th  The Confererence at the University of                              Iowa:  (All Meals Provided)Sunday, Oct 9th    …See More
Oct 5, 2011
Katie Johnson is now friends with Donna Kolp, Wendy Flinn and Phyllis Ann Talbot
Aug 2, 2010
Kortnee Fornetti left a comment for Katie Johnson
"Hi Katie! I'm from the Upper Peninsula of Michigan and was looking to connect with others affected by aHUS closer to our area. My son Kaleb, who is almost 3, was treated for 3 weeks at the Children's Hospital of Wisconsin for aHUS. Just…"
Feb 15, 2010
Cheryl Biermann left a comment for Katie Johnson
"So nice to see you here Katie, you kids are adorable, looking forwad to hearing from you."
Dec 7, 2009
Linda Burke left a comment for Katie Johnson
"Hi Katie! Thanks for joining the interactive website of The Foundation for Children with Atypical HUS - it was great to meet you at the Oct. 17th aHUS Conference at the U of Iowa. Your profile photo is so cute!! Feel free to wander about the website…"
Dec 5, 2009
Katie Johnson is now a member of The Foundation for Children with Atypical HUS
Dec 5, 2009

Profile Information

Birthday
April 1
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:
Factor H (CFH) /Protein (Gene)

Comment Wall (4 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 1:52pm on February 15, 2010, Kortnee Fornetti said…
Hi Katie! I'm from the Upper Peninsula of Michigan and was looking to connect with others affected by aHUS closer to our area. My son Kaleb, who is almost 3, was treated for 3 weeks at the Children's Hospital of Wisconsin for aHUS. Just wondering if you had any experience with the hospital. We are still learning a lot about this disorder and awaiting genetic testing results. Your kids are so adorable!
At 9:11pm on December 7, 2009, Cheryl Biermann said…
So nice to see you here Katie, you kids are adorable, looking forwad to hearing from you.
At 10:46pm on December 5, 2009, Linda Burke said…
Hi Katie!
Thanks for joining the interactive website of The Foundation for Children with Atypical HUS - it was great to meet you at the Oct. 17th aHUS Conference at the U of Iowa. Your profile photo is so cute!! Feel free to wander about the website and post questions/ comments - you can also use the Search Bar above the cute colored "bubble faces" to check out areas of special interest. We look forward to hearing your family's stories and to see more photos of those adorable rascals!
At 7:33pm on December 5, 2009, Svetlana Finley said…
Welcome to our family, can't wait to get to know u and ur family. If u have any questions just post it or look up in forum.
Svetlana
 
 
 

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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