The Atypical HUS Foundation

U of Iowa's 2011 aHUS Family Conference Video Posted

     Talk about a wonderful Valentine's present for the world's aHUS community - comprehensive video presentations about atypical HUS!  The University of Iowa has robust patient and research programs that provide cutting edge information and services to aHUS patients and their families (see The University of Iowa Children's Hospital http://www.uihealthcare.org/PediatricKidneyDisorders/).  At an October 2011 aHUS Family Conference sponsored by The Foundation for Children with Atypical HUS, those in attendance at the University of Iowa heard presentations from Dr. Richard Smith, Dr. Carla Nester, and Dr. Christie Thomas regarding a variety of topics of great interest to rare disease patients with atypical hemolytic uremic syndrome.

 

     The Foundation for Children with Atypical HUS wishes to thank the presenters for providing the latest research and data in clear, concise detail about vital information regarding aHUS diagnosis, treatment, genetics, and disease mechanics.  Complex issues regarding this complement-mediated disorder are now presented in a video format that serves to inform patients, families, and medical personnel via the following links:

 

*  Dr Carla Nester's topic:  Definition of aHUS, Diagnosing aHUS, Overview of Complement    

(length approx. 27 mins)

View Dr. Nester's presentation at:  http://www.youtube.com/watch?v=laVuvyqwwjo 

 

*  Dr. Christie Thomas' topic:  Treatment of atypical HUS:  Plasmatherapy, Eculizumab (Soliris), Options for ESRD, Transplants, Data from published studies/reports   (length approx. 33 mins)

View Dr. Thomas' presentation at:   http://www.youtube.com/watch?v=-e9COG8elf4

 

*  Dr. Richard Smith's topic:  Atypical HUS, Genetics, and the Complement Cascade 

(length approx. 32 mins)

View Dr. Smith's presentation at:  http://www.youtube.com/watch?v=dsoHbqwoi9w

 

 

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Carla M. Nester   MD, MSA

 

Assistant Professor

Director, Pediatric Glomerular Disease Clinic

The University of Iowa

 

Presented on Oct. 8, 2011

Atypical HUS Family Conference, held at the University of Iowa, USA

 

Topic:  Definition of aHUS, Diagnosing aHUS, Overview of Complement    (length approx. 27 mins)

View this presentation at:  http://www.youtube.com/watch?v=laVuvyqwwjo     

Bio for Dr. Nester: http://www.uihealthcare.com/depts/med/pediatrics/pedsmds/nester.html

 

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Christie P. Thomas  MD, MBBS

 

Professor of Medicine

Division of Nephrology

Medical Director, Kidney Transplant Program

University of Iowa:  College of Medicine

 

Presented on Oct. 8, 2011

Atypical HUS Family Conference, held at the University of Iowa, USA

 

Topic:  Treatment of atypical HUS:  Plasmatherapy, Eculizumab (Soliris), Options for ESRD, Transplants, Data from published studies/reports   (length approx. 33 mins)

View this presentation at:   http://www.youtube.com/watch?v=-e9COG8elf4

Bio for Dr. Thomas:  http://www.uihealthcare.org/physician.aspx?id=18819

 

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Richard Smith, MD

 

Professor and Vice Chair

University of Iowa

Department of Otolaryngology

 

Presented on Oct. 8, 2011

Atypical HUS Family Conference, held at the University of Iowa, USA

 

Topic:  Atypical HUS, Genetics, and the Complement Cascade  (length approx. 32 mins)

View this presentation at:  http://www.youtube.com/watch?v=dsoHbqwoi9w

Bio for Dr. Smith:  http://www.uihealthcare.com/depts/med/otolaryngology/faculty/smithr...

NOTE:  Dr. Smith is Director at MORL (Molecular Otolaryngology & Renal Research Laboratories) http://www.healthcare.uiowa.edu/labs/morl/ (genetic screening for aHUS patients) 

 

2011 Video Clip Library!

See topic specific video clips from all the 2011 University of Iowa presenters- indexed by topic.  If you are interested in a specific topic, from aHUS Diagnosis to Genetic Mutations, skip to these highlights from the full presentations.

Click HERE to view to 2011 Video Clip Library

 

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Comment by Melissa Hearn on February 23, 2012 at 2:38pm

Thanks for posting these.

 

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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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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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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