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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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.
  
• • • • • • • • • • • •
  
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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