The Atypical HUS Foundation

October 2015 Blog Posts (6)

Pediatric Adventure in Orlando

Earlier this month, Ethan and I had the incredible opportunity to travel down to Orlando for the first aHUS pediatric event. This was for patients ages 10-18 and one parent. We arrived late Friday night and were treated to a delicious dinner with all the attendees, One Source case managers, Alexion and Global Genes staff. Upon arrival we were all given bags with items for the weekend and in the kids bags were the most adorable stuffed Husky dogs. Each patient got their own aHUSky named…

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Added by Anne Bruns on October 29, 2015 at 8:12am — No Comments

The "aHUStonishing Heroes" Project

Do you know the story of your fellow aHUS friend?

Do…

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Added by Donna Kolp on October 28, 2015 at 6:22pm — 2 Comments

Invisible Disabilities Week, Oct 18-24th

It’s Invisible Disability Week !

     Atypical HUS seems to throw a variety of challenges our way.  Accurate and quick diagnosis is difficult for such a complex and rare disease, with  informational resources often not readily available from the medical community to aHUS patients and caregivers.  From the patient or family viewpoint, a compounding factor can…

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Added by Linda Burke on October 21, 2015 at 12:00pm — No Comments

November 14th in Atlanta!!!!

Who am I going to get to see in Atlanta in a few weeks?  Excited to see new folks and old friends at the Atlanta meet up?  Make sure to sign up today!  Also excited to hear a new medical perspective - every doctor explains things just a little differently and a little more sinks into my skull each time! 

Cant wait to see you all!

https://globalgenes.org/ahus-registration/

Added by Phyllis Ann Talbot on October 19, 2015 at 5:48pm — No Comments

The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!

December 1, 2014 marked a very important day in Australia.  That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved lives.  But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active.  That will likely be everyone as Soliris effectively…

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Added by Jeff Schmidt on October 18, 2015 at 1:00pm — 1 Comment

aHUS Mutations and C3, a Research Article

Check out this article, written by some of the most highly regarded aHUS ‘top docs’ from around the world:

Mapping interactions between complement C3 and regulators using mutations in atypical hemolytic uremic syndrome.…

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Added by Linda Burke on October 17, 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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