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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