Started this discussion. Last reply by Cheryl Biermann Sep 23, 2011.
Started this discussion. Last reply by Cheryl Biermann Jan 31.
Started this discussion. Last reply by Bill Biermann Oct 29, 2011.
March 24, 2012 from 6pm to 7pm – Carpenters Hall
A heartfelt thanks and gratitude for all of the hard work and dedication exhibited by the staff of Alexion. Their vision made the dream of a significantly better treatment for Atypical HUS a reality. Endless hours of research,were involved, folllowed with the effort of accelerating the FDA approval for Soliris, (Eculizumab), and most importantly, and their dedication to rare diseases.
A big Thank you is also in order to the…
ContinuePosted on September 23, 2011 at 4:47pm — 9 Comments
Sorry for the short remarks but cheryl will be out of recovery any minute, and Nathan within an an hour.
But the bottom line.......(and all of your with this disease will understand)...........NATHAN HAS produced Pee Pee.
Wow, so simply but elegant words, right? So thats the bottom line in all of this, right?
I will issue something more "Director like" shortly, but for now, time to savor this as a…
ContinuePosted on August 31, 2011 at 4:00pm — 13 Comments
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 Foundation
Saturday, Oct 8th The Confererence at the University…
ContinuePosted on June 14, 2011 at 10:46am — 2 Comments
Posted on June 2, 2011 at 6:28pm — 3 Comments
Linda Burke said… Prayer for Nathan and Cheryl,
Loving Father, we entrust our friends Nathan and Cheryl to your care; guide with wisdom and skill the minds and hands of the medical people who minister in your Name, and grant that all effects of illness be removed, that Nathan may be restored to soundness of health and relearn to live in more perfect harmony with You and with his beloved family and friends. Amen
Patricia roder said… 
Kamal D Shah said… 
Kortnee Fornetti said… Sheila Burr said… Linda Burke said… 
Colette Ann Frysz said… Linda Burke said… 
Heather Still said… Linda Burke said… 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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