The Atypical HUS Foundation

October 2011 Blog Posts (12)

This will only really make sense if you are from Georgia, but ......

This is a long standing tradition that I actually did when I was a child, well it's now a fundraiser for our local hospital and put on by Macy's, and each year the folks at out hospital nominate a patient to be the 'VIP' or very important patient who gets to ride the very first ride of the season (in a whole and I mean whole new outfit provided by Macy's). So this year Hyde and Ruthie got to experience this honor, here's a link and there should be a few more things coming in the next few days,… Continue

Added by Phyllis Ann Talbot on October 27, 2011 at 9:10pm — 2 Comments

Back in the saddle again

Hi all! After a whirlwind summer comprising graduation, getting married, honeymooning, taking my certification exam and then going through the several-months-long process of getting accredited with all my licenses and registrations, I am finally employed as a nurse practitioner and have access to a medical database again! I've pulled some interesting articles and I'm working to get full copies that I can load into the research forum. I'm so happy about the FDA approval for Soliris and…

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Added by Joy Lewis O'Brien on October 27, 2011 at 4:22pm — 4 Comments

Physician and aHUS Family "Info and Insight" into Soliris Use

     In September 2011,  the FDA approved Soliris (eculizumab) for all patients with Atypical Hemolytic Uremic Syndrome (aHUS).   Alexion Pharmaceuticals, maker of Soliris, has issued a news release with videos of both physicians and patient advocates at…

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Added by Linda Burke on October 25, 2011 at 12:00pm — No Comments

FYI

Hi all, for anyone interested in how the foundation began and little about Nathan's journey with aHUS, there will be a printed article in arnold.patch.com.  There is also a possibility of further interviews with other families in locations near .patch locations.  That is, for now. indefinite, however. 

 

This is a great way to spread awareness, so if you've anyone living in the St. Louis area, please let them know, and perhaps people who need to see it will...grassroots in…

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Added by Cheryl Biermann on October 21, 2011 at 1:08pm — No Comments

501(c) (3) - contributing to the aHUS Foundation

Question, probably for Bill & Cheryl....It's time again for my company's United Way campaign.  Last year I designated my contribution to the aTypical HUS Foundation as a 501(c)(3) tax-exempt organization. I obviously want to continue to do so and encourage others to as well....my concern is - is the money really getting to the foundation?! 

Added by Dana M Simone on October 12, 2011 at 9:10am — 4 Comments

Starting Soloris.

 Hello all, Sorry that it has been awhile for me to post but every day i check in to see how everyone and everything is going. I guess I am going to start this off with a big sorry that i wasn't able to see and talk to everyone that came to the confrence in Iowa Dr. Nester said that it went great, we arrived a day later. This is our second trip to Iowa we are here this time to start Soloris. I don't know if anyones remember back when… Continue

Added by Destiny Floyd-Rakes on October 10, 2011 at 3:11pm — 4 Comments

www.kidneysnowincluded.blogspot.com

Many of you have been so kind to follow my kidneys not included blog but since a new chapter has begun.....like a butterfly (thank you Linda) I have started a new blog following my journey post transplant.

www.kidneysnowincluded.blogspot.com

I hope you will find it uplifting and encouraging. And please feel free to ask me any questions. I am an open book and honestly, nothing is too personal! LOL

If you are not…

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Added by Jill Ziegler on October 9, 2011 at 11:02pm — 11 Comments

October : News from France

Lou-Anne is great. We have to put on register the second date of birth: July 15, 2011 .... That's incredible. She is like all other children. She is more tiring as before. Now it is we who get tired before her. It's wonderful. We have to make her post-transplant renal biopsy (here in France is 3 months). We await the results. Lou-Anne returned to school like other children on September 5. She loves and she is able to stay all day.

Our daughter has changed. She grew up. She wakes in the… Continue

Added by Nicolas on October 9, 2011 at 2:18pm — 5 Comments

aHUS Family Conference - A Brief Message

Greetings from Iowa!

     Thanks to the wonderful hospitality of the team at the University of Iowa, members of the Foundation for Children with Atypical HUS spent today learning about the most current aHUS research and information for experts in the field.   We appreciate everyone's efforts and participation to make this a meaningful event, framed by opportunities to met other aHUS patients and families.  We're pleased to announce that presentations were recorded and will…

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Added by Linda Burke on October 9, 2011 at 12:19am — 3 Comments

Nathan has blood in his urine tonight, maybe from jogging, maybe it's from the stint?  

Nathan has blood in his urine tonight, maybe from jogging, maybe it's from the stint?

 

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Added by Cheryl Biermann on October 5, 2011 at 10:30pm — 6 Comments

quick update

I didn't post the labs because they are pretty much holding steady.  The Prograf level shot way up, they want him around 8 and he's at 11 so we'll change the dose and go back Friday, we were hoping this was our first once a week but it was not meant to be. 

The controversy over the kidney ultrasound has been resolved, they've decided the upper part of the kidney they were  concerned about is probably fine, there is probably a layer of fat which is common in adult kidneys, skewing the…

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Added by Cheryl Biermann on October 4, 2011 at 3:05pm — No Comments

Join the Foundation in Iowa on Oct. 8th

 As a Collaborative Network of Patients, Families, and Researchers,

 Join us in Iowa on Oct. 8th for the 2011 aHUS Family Conference - sponsored by The Foundation for Children with Atypical HUS

Details and agenda available at…

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Added by Linda Burke on October 1, 2011 at 12:28am — 1 Comment

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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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