The Atypical HUS Foundation

October 2014 Blog Posts (7)

Iowa thoughts, research highlights

I had the good fortune to attend the Iowa conference this past weekend with my mother. It was such a great success, I hardly know where to begin! The hotel staff were very helpful and welcoming the multiple times I contacted them regarding shipping dialysis supplies, and the complimentary room was truly appreciated! I was rather travel-worn by the time I arrived (though others have better stories to tell), and unfortunately I missed the meet-and-greet. I would have benefitted from a little…

Continue

Added by Grace on October 29, 2014 at 10:43pm — 10 Comments

2014 Family Conference in Iowa

I am still in awe of the effort put forth to host the Family Conference in Iowa.  My sincere appreciation to all who made this event a realization.  The information we anticipate from continued research efforts at the University of Iowa will shed more light on this disease that makes us a family.  I am very excited for what the future holds!

Added by Crystal Ferreira on October 29, 2014 at 5:26pm — 2 Comments

Back to reality - thanks to everyone for coming!!!

Hi everyone - just wanted to reiterate how much we appreciate all of you making the huge effort to travel to the University of Iowa this past weekend for the Conference!  I can't tell you how much I enjoyed getting to meet as many of you as I could and hate that I know I missed some folks - you'll just have to come back!  Again - thanks so much and we hope you felt like it was well worth your time to make the trip with all the info provided.  As Linda said - join this webpage and let your…

Continue

Added by Phyllis Ann Talbot on October 27, 2014 at 1:00pm — 2 Comments

Iowa aHUS Mtg. Starts Tomorrow - What's NEW?

     It’s HERE!  The 2014 aHUS Family Conference at the University of Iowa on October 24-26th begins tomorrow , and we all look forward to an interesting meeting.  Wondering how to meet other patients and their families?  Come to the NORD Meet and Greet from 4-6pm – signs will direct you from the Sheraton lobby.

 …

Continue

Added by Linda Burke on October 23, 2014 at 4:30pm — 1 Comment

Sheraton Hotel, Iowa Cty, Iowa - 3193374850

The Sheraton offers upon request refrigerators and cribs at no extra charge. For any other questions about your rooms, please call the number above. The staff is friendly and helpful.

Added by Cheryl Biermann on October 18, 2014 at 11:40am — No Comments

I'm back, and I've been busy!

Hello Everyone!

I am happy to be back on the website.  After my second kidney transplant on March 7, 2013, I have been working my tail off trying to advocate for kidney disease, aHUS, and other chronic illnesses. 

Currently, the play I wrote and directed, Dancing in the Storm, is performing at Redtwist Theater in Chicago, IL.  It is based on my own blog about…

Continue

Added by Tonia Sina Ellis on October 14, 2014 at 11:30pm — No Comments

ASHUA - Innovative Members of the aHUS Global Alliance

     More great innovations from the aHUS community in Spain!   After last year’s release of a Spanish language iBook for aHUS patients and those who support or care for them, ASHUA has made available an Emergency Medical Bracelet specifically…

Continue

Added by Linda Burke on October 13, 2014 at 11:30am — No Comments

Monthly Archives

2016

2015

2014

2013

2012

2011

2010

2009

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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.

************************

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 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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service