The Atypical HUS Foundation

August 2014 Blog Posts (8)

UPDATE: "Potential New Treatment" Forum Launches

 

     Information about rare disease research and studies can be difficult to unearth, so a key component of our efforts at www.atypicalhus.org is our commitment to act as a hub connecting information and resources for aHUS patients, families, and caregivers.  Our Atypical HUS Foundation is dedicated to providing an objective, independent network of information…

Continue

Added by Linda Burke on August 31, 2014 at 8:03pm — 1 Comment

Who cares about that Atypical HUS Foundation?

     Well, you should…..if you have any interest in the needs and concerns of aHUS patients, caregivers, and families.   Our foundation is an independent, non-profit organization dedicated to providing information, insight, and support to all those challenged with this rare disease.  We serve patients of all ages and provide a networking hub for aHUS information across the United States and throughout the world, acting as a ‘founding community’ for…

Continue

Added by Linda Burke on August 28, 2014 at 1:08am — 2 Comments

Ohio was the place to be this weekend!!

Wow! What a weekend at the Columbus Ohio meetup! It was the biggest meetup I have ever been to. I have so much to share and I will very shortly as soon as I get caught up on some rest. But just a quick glimpse into the weekend, global genes had everything planned out perfectly. Dr. Cataland was amazing, approachable and a VERY knowledge doctor in our world of Ahus. Patients of Dr. Cataland are very blessed.



I was blessed to meet so many new Ahus families who came to the meet up as… Continue

Added by Jill Ziegler on August 24, 2014 at 1:16pm — 7 Comments

Disability

When Cole was first diagnosed in March with Ahus the hospital social worker suggested that I apply for Disability benefits for Cole so I started the process. Last week they called and said his case was being moved to a different office and they were still reviewing it. I was wondering if anyone has experience with social security benefits is it something that is usually granted to kids with Ahus?? Is it worth fighting for?

Added by Alison Montes on August 20, 2014 at 8:00pm — 3 Comments

aHUS and High School

Life is tough. High school is tough. Both can be even tougher when you fight a disease such as aHUS.

I was home schooled for most of my education. I liked it, but there came a time when I wanted to enjoy my high

school years. I wanted to go to football games, meet people that would become life long friends. This was a huge

step for anyone, and it was huge for me.

I am on dialysis, and have been since I was 4. When I started going to high school, I was on PD, which…

Continue

Added by Jonathan H. Kolp on August 13, 2014 at 10:17am — 4 Comments

SEAN AND HIS PART IN aHUS RESEARCH

Just up from this new activity box there is a video of Prof. Judith Goodship. Standing next  to her is Sean who Tim Goodship referred to in his recent webinar as being  a survivor of a family blighted by aHUS and which led him to research aHUS and discover the Complement Factor H mutation. Sean has been on dialysis for 25 years but has recently had a successful transplant, supported by eculizumab. He is a Geordie and lives in Newcastle upon Tyne ( my profile pic is taken on the Tyne Bridge!)…

Continue

Added by Len Woodward on August 12, 2014 at 3:38pm — 4 Comments

Iowa AGENDA for aHUS Family Conference, Oct. 24-26th

 

     The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.

     JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest  topics such as mutations, disease…

Continue

Added by Linda Burke on August 6, 2014 at 9:00pm — No Comments

NEW- Must See aHUS Video!

     On July 31st, the global aHUS community was invited to participate in ‘real time’ with a webinar offered by Dr. Tim Goodship, a world leader in aHUS research.  Hosted by EURORDIS, and offered on the RareConnect’s dedicated aHUS global webpage, Dr. Goodship gave a comprehensive overview of aHUS information. …

Continue

Added by Linda Burke on August 4, 2014 at 12:46am — No Comments

Monthly Archives

2017

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