The Atypical HUS Foundation

May 2011 Blog Posts (11)

Milestones...



As I sit here and reflect back on my son's journey, I can say that I am

truly blessed. Next Friday, Jonathan will be graduating from high school. It is

extremely bittersweet for me. I think back when times were tough, and when time

stood still. Those dark times, alone in my thoughts, asking God, please, please,

give him a chance to live and shine. I remember a particular time when Jonathan

was in a coma, and the Doctor's telling me to keep talking to…

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Added by Donna Kolp on May 27, 2011 at 11:12am — 6 Comments

Who Us? Are your sure???

Monday morning, I looked up from my seat in the dialysis unit next to Nathan's chair and saw the transplant nurses come down the hall, immediately, the words, "who you gonna call?", from Ghost Busters popped into my head.  Watching to see who the lucky kid was, I locked eyes with Erin, (Nathan's one-time TCU nurse), to say hello, and was stunned to hear her say,"I have a letter here for you from Blue Cross approving Eculizumab for transplant for Nathan!"  You should have seen me,  I was…

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Added by Cheryl Biermann on May 26, 2011 at 10:43pm — 9 Comments

thought i would update you all on a little of our life as whole, not just Ash!!!  We found out a couple of weeks ago that i am pregnant again!!! Yes again... yes that makes 5 kiddies!!!! This was not…

thought i would update you all on a little of our life as whole, not just Ash!!!  We found out a couple of weeks ago that i am pregnant again!!! Yes again... yes that makes 5 kiddies!!!! This was not a planned pregnancy so i have spent most of the last couple of weeks trying to get my head around the idea, which i think i am finally starting to do!! The funny side to all this is that Jason went to see the specialist in March to organise to get the snip done and has been on the waiting list…

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Added by Kerri Grey on May 26, 2011 at 6:41am — 4 Comments

Tornados

We've received a couple of emails, so I thought it might be wise to post something about the tornados that have been so devastating in Missouri.  So far, the St. Louis area has been hit pretty hard, but there were no fatalities, thank God.  The most recent tornado tore up a small town, Joplin, MO a few hours southwest of us.  There were, unfortunately, many deaths and the toll is still rising.

 

This was one of those massive storm systems that was on the ground for four…

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Added by Cheryl Biermann on May 23, 2011 at 11:26am — 3 Comments

Big day, a day that wasn't ever in the plans.

Tomorrow, Friday May 20th is a day that not many thought I would ever live to  see, but I will indeed live to see it and that is my college graduation. I have worked so hard to get to where I am now, and tomorrow I will be getting my bachelor's degree in veterinary technology-to add onto the other things I already have; my AS in vet tech and my NYS veterinary technician license.  As I enter the next phase of my life-the phase in which I am to find a job in the veterinary field, trying to…

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Added by Jessica Olivia Frysz on May 19, 2011 at 3:36pm — 9 Comments

International aHUS Community

Our friends in Italy and Spain we're having a conversation about Soliris side effects on the International aHUS Community here: http://www.rarediseasecommunities.org/en/community/atypical-hemolyt...

 

Come share your experience in English and they can request for it to be translated by humans into Spanish and…

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Added by Rob P on May 17, 2011 at 6:00am — No Comments

Announcing Our Press Packet Project

Dear Parents,

 

We are working on a developing a designed document to represent the Foundation for Children with Atypical HUS, a 'press packet' project headed by the talented Jodi Kayler.  With your input, we together can design an informative and meaningful presentation that will enlighten those seeking to learn more about aHUS and its effect upon patients and their families.  Below, Jodi offers her overview of our aHUS press packet project:

 

"If the FDA…

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Added by Linda Burke on May 16, 2011 at 11:30pm — 4 Comments

National Nurses Week, May 6th -12th

Every year from May 6th - 12th the American Nurses Association celebrates National Nurses Week, and the 2011 theme is "Nurses Trusted to Care." My favorite quote honoring nurses is, "You heal sometimes. You relieve often. You comfort always." Camus. 

  
     A special thanks goes out to all the fantastic school nurses who provide children everything from band-aids and coldpacks to daily meds and emergency interventions,…
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Added by Linda Burke on May 9, 2011 at 8:30am — 4 Comments

A very long awaited update on Ms. Jessica Frysz

Well.. as of March 2011, I have been a Licensed Veterinary Technician (LVT). I took my state boards, managed to pass them first try.  I graduate from Medaille College on May 20th and continue my hunt for a vet tech job. I was called by a vet hospital in Albany, NY and also in Northern Virginia. Albany, I turned down and they filled the position in Northern, VA but I will continue to be determined and upbeat while job hunting.

 

My grades have been extremely good this semester…

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Added by Jessica Olivia Frysz on May 7, 2011 at 12:23am — 4 Comments

Here's my latest carepage update - first off - DUH apparently I can't count - me earlier total was off by the amt of cash we collected as well as some late $$'s in - so here's the new total.  Also - …

Here's my latest carepage update - first off - DUH apparently I can't count - me earlier total was off by the amt of cash we collected as well as some late $$'s in - so here's the new total.  Also - I'm still waiting for a copy of the video so I can upload it here under video's but in the meantime - here's a link to it on facebook - let me know if it doesn't work - you may have to copy and paste it rather than just click on it.  Thanks!

 

OK - SO sorry…

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Added by Phyllis Ann Talbot on May 5, 2011 at 1:49pm — 2 Comments

Tornado's

Just wanting to say that i am thinking of my friends in America who have been touched by the recent tornado's. I hope you are all safe, you are all in my thoughts and prayers!!!

Added by Kerri Grey on May 1, 2011 at 11:20pm — 2 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.

************************

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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