The Atypical HUS Foundation

November 2015 Blog Posts (6)

Cyber Shopping Benefits aHUS Research

iGive.comiGive.com     Taking advantage of Cyber Monday deals or doing holiday shopping online?  Sending flowers for the holidays?  Booking holiday, work, or vacation travel?  The Atypical HUS Foundation supports multiple aHUS education and outreach efforts across America and beyond,as well as issuing an annual call to aHUS researchers seeking grants for projects of direct benefit to aHUS…

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Added by Linda Burke on November 29, 2015 at 1:00pm — No Comments

KDIGO Conference in Barcelona - What's the News?

     As patients and caregivers we often wonder what constitutes the best standards of care and monitoring for aHUS patients.  With most diseases or disorders, physicians often rely on ‘best practice’ protocols developed by medical experts, adding further meaning to such standards with education provided by their training,  experience gained in practice, and information supplemented by ongoing/updated professional development (e.g. medical conferences).  When a…

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Added by Linda Burke on November 23, 2015 at 10:30pm — 2 Comments

Global aHUS Experts Meet in Barcelona at KDIGO Conference on Kidney Disease

     Tonight began the KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain.   The opening reception was a Who’s Who in the global world of aHUS researchers and clinicians, so I was both humbled and honored to speak with these world class aHUS experts from nations all over the world to include Italy, France, the UK, Germany, Sweden, the Netherlands, Turkey, India, China, and the UK. View the full…

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Added by Linda Burke on November 19, 2015 at 5:00pm — 5 Comments

Tell the Pharmaceutical Benefits Advisory Committee (PBAC) to Recommend Soliris for Australians with aHUS

Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens".  The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time…

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Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments

Amazing time in Atlanta this weekend

I had such a great time at the Atlanta Meet up this past weekend!  Got to meet new friends and reconnect with old ones.  It's always so great to hear all the different stories and be impressed once again with how great of a community we have!  Loved hearing Dr. Swinford's medical talk - each doctor explains things just a little bit differently and I learn something new every time.  It was also very cool to hear our very own case manager Kim Chiarella represent One Source and so great to put…

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Added by Phyllis Ann Talbot on November 16, 2015 at 2:38pm — No Comments

Please Help Our Friends in Australia Who Desperately Need Soliris

Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November.  Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on.  Feel free to copy the exact email but replace my story (in red) with your personal story.  Your personal story just may be the one that makes a difference!



And please sign the petition that will…

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Added by Jeff Schmidt on November 2, 2015 at 8:00pm — 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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