The Atypical HUS Foundation

June 2015 Blog Posts (8)

Global Genes meet up

Ok, Ahus folks Global Genes meetup still has room for the Minneapolis Minnesota patient meeting August 7 and 8!!!

You will hear a fantastic and informative presentation by one of the University of Iowa's expert physicians, Dr. Craig Shadur.

Also a Friday night presentation by a mother of a son with Ahus, Barbara Farcher and a Saturday presentation by an adult Ahus patient, Jill Ziegler



This meet up will not disappoint and you will leave feeling empowered and ready to battle… Continue

Added by Jill Ziegler on June 29, 2015 at 8:06pm — No Comments

aHUS Alliance - Conference of Issues & Information among 12 Nations

     The aHUSUK hosted their 2nd aHUS Patient and Family conference on Saturday, followed today by the aHUS Alliance of 12 nations, currently happening now.  Many nations attended a very informative meeting on Saturday hosted by the the UK patient organization, with multiple presentations by various physicians with clinical and research expertise.  Similar to the 2014 Family Conference that The Atypical HUS Foundation hosted with the University of Iowa.  I'm pleased to report that Len…

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Added by Linda Burke on June 28, 2015 at 9:30am — 2 Comments

Put Your Facebook Skills to Use to Help Our Friends in Sweden Gain Access to Soliris (eculizumab)

The situation in Sweden is bad.  Though those with aHUS who are presently on Solris will remain on it, no new patients will have access to Soliris.  This is unacceptable.  Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII is fighting hard for all those with aHUS.  We need to help him and all our friends in Sweden.…



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Added by Jeff Schmidt on June 25, 2015 at 2:46pm — No Comments

Global Genes and Ahus Foundation meetup in St. Louis, MO June 2015

As soon as you arrived in St. Louis this weekend the air was hot and sticky and there were nothing but a sea of red shirts everywhere. Why? Because you were in STL in June and the Cardinals had a home game! Which we won by the way!!! Go Cards!!!

But for about 30 of us, we were not there for the game. No, we were there for much more serious reasons, but like the Cardinals, WE ARE WINNING!!!! We are survivors of Ahus. Many of us are just starting our journey with this complicated disease and… Continue

Added by Jill Ziegler on June 14, 2015 at 5:49pm — 1 Comment

St. Louis Meetups with The aHUS Foundation and Global Genes, 2015

St. Louis Meetup

at the

Ballpark Village Hilton

          I have to admit to…

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Added by Cheryl Biermann on June 14, 2015 at 3:30pm — 3 Comments

Sweden Tells its People “No Soliris for New Patients”

We already were aware of the unequal care of those with aHUS in Sweden.  It seemed like where you lived (or your postal code) determined whether Soliris would be available.  This was going to be a hard enough fight.

 

But now I’m told by Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII, that the Swedish Health Minister has decided that no new patients will receive…

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Added by Jeff Schmidt on June 10, 2015 at 5:37pm — No Comments

New Orleans Meet up

Yesterday, the New Orleans Meet Up wrapped up its session.  Although it was a small group, it had a nice intimate vibe.  I especially enjoyed the Friday night dinner.  My father was able to attend as my plus one since my hubby has been dealing with getting my Father in Law settled into his Long Term Acute Care facility & preparing my Mother in Law to be living on her own.  Saturday during the lunch, my parents came down with Devin and ate lunch with the group.  Devin got to meet another…

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Added by Paula Blanchard Lamigo on June 7, 2015 at 4:49pm — 2 Comments

aHUS News - In America and Beyond

The aHUS Advocate – What’s New(s)?

 

     We’ve finally made it to June, and hopefully all of our friends in the aHUS community are looking forward to some fun and relaxation in better weather!  We share the joy of our aHUS pediatric patients at the start of summer vacation, and encourage those of you facing special medical challenges right now to share your story online…

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Added by Linda Burke on June 4, 2015 at 9:00pm — No Comments

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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.

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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 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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