The Foundation for Children with Atypical HUS

Univ of Iowa Translational Research

Good Morning

We wanted to let the group know that Tara from Dr. Richard Smith's lab here at the U of Iowa was recently awarded one of the very competative training grants in Genetics to further carry out basic reseach in aHUS in Dr. Smith's lab! We are very excited for her and our overall program. This really exposes the cutting edge genetics she is doing and a great achievement for her. It meshes so well with Dr. Nester's translational scientific and clinical efforts at our center as well!

Thank you to all the folks at the Foundation for supporting our program from the Scientific Bench all the way to the bedside!

Kind Regards
Patrick Brophy MD
University of Iowa
Pediatric Nephrology


PS Our recent Pediatric eculizumab induction renal transplant patient continues to do very well and it sure is nice to see her off of dialysis and getting ready to go back to school!

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Comment by Cheryl Biermann on December 16, 2010 at 5:54pm

Merry Christmas to all of you working in Iowa, our aHUS's families' "field of dreams"!

Comment by Wendy Flinn on December 16, 2010 at 9:52am

It's such a great feeling to know about all the hard work going on in Iowa City to help our kids in the future. Thanks Dr. Brophy and Happy Holidays to you and your team!

Comment by Paula Blanchard Lamigo on November 7, 2010 at 7:36am
Congratulations Tara! What an accomplishment! Your continued research in aHUS, has helped numerous families and has had a far-reaching positive impact on many people. It's a wonderful feeling to know that someone like you is helping to unravel some of the mysteries of aHUS!!
Comment by Cheryl Biermann on November 6, 2010 at 7:30pm
Congratulations, Tara!
Comment by Joy Lewis O'Brien on November 6, 2010 at 10:01am
Congratulations, Tara, and thank you for all your work!
Comment by Linda Burke on November 5, 2010 at 12:27am
Congratulations to Tara Maga, a Member of this website and a PhD student at the University of Iowa studying the genetics of aHUS, specifically other genes may contribute to the development of aHUS.
The Foundation for Children with Atypical HUS is proud to support the work of such meaning work to unlock the complexities of aHUS as they point us toward better understanding and treatment, as well as improved clinical practices and patient outcomes. Kudos!!!!

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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