The Atypical HUS Foundation

September 2015 Blog Posts (7)

aHUS Regional Meetings, Only a Few Left in 2015!

     As fall begins, new opportunities to learn and connect are still ongoing in the aHUS community across America.  The latest aHUS regional meeting was hosted by NORD in Chicago on Sept. 18-19th, with the highlight being a presentation by aHUS medical expert Dr. Bradley Dixon of Cincinnati Children's Hospital Medical Center.  Dr. Dixon’s presentation was clear and concise, but especially valuable and appreciated was Dr. Dixon’s willingness to answer questions from the…

Continue

Added by Linda Burke on September 27, 2015 at 3:48pm — No Comments

Sept 24th - Today is international aHUS Awareness Day!

     It’s the 1st ever international aHUS Awareness Day around the world!  September 24, 2015 is marks the inaugural launch as a global day designated to add visibility to those challenged by the very rare disease atypical HUS and sponsored by the aHUS Alliance. 

     Key projects for the 2015 aHUS Awareness Day campaign included:

      * A PRNewswire announcing this special day of recognition for aHUS patients, their issues, and various…

Continue

Added by Linda Burke on September 24, 2015 at 1:30pm — No Comments

aHUS Awareness Day, September 24, 2015 Outreach Project

Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching.  We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.

 

For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…

Continue

Added by Jeff Schmidt on September 18, 2015 at 1:30pm — 3 Comments

Be an aHUS Advocate - Sept 24th is aHUS Awareness Day

     Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.

You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue?  Since aHUS is a complex and rare disease,…

Continue

Added by Linda Burke on September 17, 2015 at 10:00am — No Comments

One year anniversary

It will be one year next month that I started treatment with Soliris for aHUS.   My oncologist is researching my stopping treatments.  Has any other member stopped their infusions.

Added by Lynda Swope on September 7, 2015 at 1:41pm — 3 Comments

aHUS Awareness Day, September 24, 2015 Kids Project

Hey Americans!  We have another project for the first ever aHUS Awareness Day on September 24, 2015.  Alyssa Deffenbaugh and I have been working together through the Atypical HUS Foundation on ideas for this special day.

For this project, Alyssa came up with the brilliant idea of getting the kids involved.  She would like them to draw a picture that shows what it means to be healthy or maybe how they feel about having…

Continue

Added by Jeff Schmidt on September 2, 2015 at 3:17pm — 1 Comment

Sept 24 Marks the first aHUS Awareness Day!

 Join In - 1st  annual aHUS Awareness Day, set for Sept 24, 2015!

     The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  On 24 September 2015, help us raise visibility for patient needs and issues by joining in to post, blog, and Tweet about the aHUS community.

     Between now and aHUS Awareness Day, you’ll see…

Continue

Added by Linda Burke on September 1, 2015 at 5:30pm — 2 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