The Atypical HUS Foundation

June 2014 Blog Posts (12)

It's that time - start making your reservations for the Foundation's meeting at the University of Iowa

Hi everyone - so excited to finally start posting some details for this year's meeting at the University of Iowa.  Here's the information for you to start making travel plans:

Meeting will be Sat, October 25 at the University of Iowa with EXCITING news this year - for the first time ever the Foundation will be covering the hotel rooms and also providing a $100 travel stipend per family - hopefully this will help bear some of the brunt of travel expenses and we hope to see…

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Added by Phyllis Ann Talbot on June 30, 2014 at 4:27pm — 4 Comments

2014 aHUS Meetings - an UPDATE

  Safe travels to all attending the great aHUS regional meeting which begins tonight in NASHVILLE - our thanks to host organization NORD, and our Foundation’s representative, Melissa Hearn. Missed this weekend’s opportunity?  Register now for any/all of these remaining 2014 aHUS meetings to learn and share with other aHUS families!

Hear a presentation by an aHUS medical expert, capture this chance to ask a physician your aHUS questions, connect with other aHUS patients and…

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Added by Linda Burke on June 27, 2014 at 11:00am — No Comments

Port Infusions

My son Cole had port placement surgery a couple days ago and he will be having his a first infusion using his new port on Monday. I am just curious what to expect will it be somewhat pain free now....or is it still pretty painful. Coles iv infusions were so hard for him they always had trouble finding a vein and he had to be held down and it was always very traumatic for him. I told him things will be much easier now with a port....I'm just wondering if this is true.?

Added by Alison Montes on June 25, 2014 at 7:10pm — 7 Comments

Swollen Feet

Today my get swelled up like crazy. BP was fine and I feel fine. Trying to keep my feet up, but it's hard to do when you're on your feet all day. Any suggestions to bring the swelling down?

Added by Lisa Stockdale on June 17, 2014 at 9:09pm — 3 Comments

HAPPY FATHER'S DAY!

  We honor the special men in our lives who are aHUS patients, fathers, uncles/grandparents of children with aHUS, and spouses/caregivers who spend countless hours adjusting…

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Added by Linda Burke on June 15, 2014 at 10:00am — No Comments

NORD hosts June 28TH aHUS Regional Meeting in NASHVILLE

 

Meet and Learn about aHUS at

NORD’s June 27-28, 2014:  Nashville, TN

Foundation for Children with aHUS, Speaker:  Melissa Hearn

 

The National Organization for Rare Disorders invites patients and caregivers/families affected by…

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Added by Linda Burke on June 13, 2014 at 10:30am — No Comments

Multi-National aHUS Registry DATA

   Ever wonder why the Foundation for Children with Atypical HUS is an active participant in aHUS global affairs?  Our collaborative efforts optimize opportunities to assist with the flow of reliable, current information and additionally have the potential to improve patient outcomes worldwide.   Here's a recent post in one of our onsite forums, contributed by Len Woodward of aHUSUK, an aHUS advocacy group based in England.  You'll note that internationally…

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Added by Linda Burke on June 10, 2014 at 3:41pm — No Comments

Hello and Intro

Our daughter Lily, age 11, was just diagnosed with aHUS in February 2014.  After 2 bouts of the flu which were her trigger, she suffered total kidney failure in February 2013, leaving her in a coma for a week and on on round-the-clock dialysis for two weeks.  She spent a full month in the hospital and 3 months on dialysis 3 a week. She has been on 7-8 daily blood pressure medications since then and her doctor made the final diagnosis of aHUS (based on clinical observation, no genetic…

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Added by Chris R on June 3, 2014 at 2:08pm — 6 Comments

Seattle Meetup

I was able to attend the family conference sponsored by Global Genes in Seattle this weekend. What a great event. The whole conference was run perfectly from delicious food to great accomodations and thorough information. Dr. Ruth McDonald was a rock star and I could have listened to her speak for hours. I am so very thankful for her and so many doctors that are putting so much of their time and energy into the study of this disease. Even though I had been to a conference last year, I still…

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Added by Anne Bruns on June 2, 2014 at 6:17pm — 4 Comments

Alexion Pharmaceuticals- BusinessWire© Releases

   

     BusinessWire© carries corporate news and press releases from across America and beyond.  Today Alexion Pharmaceuticals released two BusisnessWires© of interest to the atypical HUS community and the medical personnel who treat aHUS patients.  For questions related to either BusisnessWire©,  contact 1-888-SOLIRIS to learn more.

     New data from clinical trials regarding the chronic use of Soliris® (eculizumab) demonstrate  that this drug is effective in a…

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Added by Linda Burke on June 2, 2014 at 2:30pm — No Comments

Another successful NORD event in New Jersey!

Back from New Jersey where Steven and I attended the second (I hope annual) NORD event for aHUS patients and families. We met some great people at the kick-off dinner Friday night and conversation was lively and constant. For many, it was the first time meeting others fighting the same fight and celebrating the same victories.



On Saturday, about 30 of us gathered for an educational presentation from Dr. Ken Lieberman, an aHUS expert. Dr. Lieberman speaks very conversationally and his… Continue

Added by Dana M Simone on June 1, 2014 at 9:19pm — 4 Comments

AHUS Seattle Conference

I was finally able to attend an aHUS conference in Seattle. Although many tears of anger, frustration, and fear were shed it was also filled with love, support, and hope. I am so grateful for the foundation, global genes, nord, and alexion and all who make these meetings possible. I can't wait to make another conference and stay connected.

Added by Sharon Madrid on June 1, 2014 at 3:19pm — 3 Comments

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