The Atypical HUS Foundation

May 2015 Blog Posts (11)

NEW Rare Disease Policy? Update from America

     Have you heard about the OPEN ACT (Orphan Product Extensions Now Accelerating Cures & Treatments), and its implications for increased treatment options for patients challenged by a rare disease diagnosis?  Did you know that last week the 21st Century Cures legislative initiative was unanimously approved by the House Energy and Commerce Committee in Washington DC?  Current events in rare disease policy and…

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Added by Linda Burke on May 26, 2015 at 10:00pm — No Comments

Following up - The Fight Isn't Over

Hi guys! I'm sorry that I have not been super active on the pages, life as we all know it has been crazy and very fast moving! I have gotten many emails over the past couple months, many from people asking how I am doing now, so I feel that it is only fair and appropriate to provide some updates as to where I am today. 

The last time that I wrote, I was a manager at a store called Chicos. I have since put in two weeks (months ago) and am currently a full time employee at an…

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Added by Megan Russo on May 24, 2015 at 10:32pm — 1 Comment

Abdominal pain

Just wanted to share a great experience we have had with a homeopathic program. I will try and make this as short as possible, but more importantly, I really want to share our families life changing experience.



Like a lot of our children and adults with aHUS, our daughter, Devon has suffered from abdominal pain. She is now 11-year-old and was diagnosed 3 years ago. Two weeks before she was diagnosed, abdominal pain was one of her first and consistent symptoms. The 5 weeks she was in… Continue

Added by Diane schaller on May 19, 2015 at 10:41pm — No Comments

Global Spotlight – Stefan Persson from Sweden’s aHUS Support Group

I’d like to introduce you to Stefan Persson.  He lives in Sweden and is the founder and President of the Swedish aHUS support group Ahus-ffii.  This group was started during the summer of 2014.

 

 

In 1993, Stefan had a daughter who got sick with aHUS (though diagnosed with TTP-HUS)…

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Added by Jeff Schmidt on May 19, 2015 at 6:22pm — 3 Comments

Pittsburgh Meet Up!

I just returned from the most recent stop on the AHUS Tour, Pittsburgh PA! For those of you who have attended meet-up before...you know that as part of the friday evening "icebreakers" they ask everyone to share an embarrasing moment...well mine this week was I MISSED MY FLIGHT!! Holy Cow....I arrived at the airport without my licnese, which I had taken out of my wallet the previous day...and didn't put back into my wallet.....OH NO!!! So I jumped in my car in Albany NY and drove as quickly as… Continue

Added by Barbara Farcher on May 18, 2015 at 11:35am — No Comments

Florida Meet-ups

Florida has been “HOT” on the Meet-up Tour this year with locations in Pensacola, Tampa and Orlando.

My 8 year old son (Tyler) was diagnosed 14 months ago-- so Tampa was my first aHUS Meet-up experience.  I did attend the Iowa conference last Fall, but they couldn’t be more different.  The small group setting of the Meet-ups is unique.  Sharing your family journey with others brings out a lot of raw emotions, but the mental healing that comes with it is important.

Global Gene’s…

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Added by Lisa Grooms on May 17, 2015 at 8:14pm — No Comments

Summer aHUS Events – and Physician Experts

     As summer approaches, so do more opportunities to learn about aHUS and to connect with other aHUS patients, caregivers, and family members!   You are not alone, and support is as close as tapping your keyboard to join the aHUS community, and to learn about resources currently in place to help ease your mind and lighten your heart.

     Safe travels to those attending this weekend’s aHUS regional meeting in Pittsburgh this weekend May 15-16th, hosted by…

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Added by Linda Burke on May 15, 2015 at 6:30am — No Comments

Management of aHUS in Children - An International Consensus, Feb 2015

     The Atypical HUS Foundation is honored to present this review of a key article that appeared in Pediatric Nephrology in Feb. 2015.   Written by consensus among 20 leading clinicians and aHUS investigators from around the world, this document gives detailed information of interest to aHUS families and to physicians who treat aHUS patients (with particular interest regarding pediatric patients).   As one of the 20 authors, Dr. Carla Nester of the University of Iowa was kind…

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Added by Linda Burke on May 8, 2015 at 1:00pm — 3 Comments

It's National Nurses Week - May 6-12th

     Every year from May 6th - 12th the American Nurses Association celebrates National Nurses Week.   My favorite quote honoring nurses is, "You heal sometimes. You relieve often. You comfort always." Camus. 

 

     From…

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Added by Linda Burke on May 6, 2015 at 12:00am — No Comments

Exciting leadership announcement!

The Atypical HUS Foundation couldn't be more excited to announce 2 new board members coming on 'board' effective July 1, 2015!  Let us first say how impressed and blessed we are with the quality and quantity of great candidates - what an embarrassment of riches!  We truly feel like this is just a first step towards expanding our leadership pool and opportunities as the Foundation moves into a…

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Added by Phyllis Ann Talbot on May 5, 2015 at 10:06am — 2 Comments

Are you ready for some New Orleans fun? Regional Meet up is coming this June!!!!

I just wanted to remind everyone that the regional meet up in New Orleans is coming up June 5-6th in New Orleans.  The deadline for registration is May 22nd.  Can't wait to see some of you there!  Come for the wonderful information, come for the food, come to experience the wonderful city!  Unfortunately, my family's time here is coming to an end, but we love it here & I can't wait to share our experience with aHUS with those of you who can make it!  I can't wait to meet new friends and…

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Added by Paula Blanchard Lamigo on May 3, 2015 at 2:50pm — 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.
  
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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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