The Atypical HUS Foundation

November 2010 Blog Posts (29)

You can help us.

Hello everyone,

We have in France, an organization that raises funds for research and called TELETHON. TELETHON provides funding for many projects on rare diseases but it is threatened. Here is a call to support this organization. Help you by signing the online call EURORDIS (the same of N.O.R.D. in USA). Thank you to relay the message

Here is the message:…
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Added by Nicolas on November 30, 2010 at 4:23pm — No Comments

A Truly Thankful Thanksgiving

There are many reasons to be thankful at the holiday season and we all take many of our blessings for granted on a daily basis until something happens that completely turns our world upside down. Losing our health is one such event for sure. We enjoyed a very thankful holiday this Thanksgiving with Alyssa and her donor Jennifer seated at the same table. As Alyssa pointed out, Jenn's two kidneys were both at the table--but in two different bodies!!! Strange but true. Alyssa has been feeling so… Continue

Added by Deborah Deffenbaugh on November 29, 2010 at 9:34pm — 3 Comments

Clinic and Echo

Hi there everyone,

Hope you all had a great Thanksgiving! The Talbot/Tallant clan sure did (thanks so much to the Sailors for letting us horn in - SO yummy!). Hyde had clinic today and a couple of funny things - one he met a little boy named Zion who has a totally different disease than Hyde - but end result - he is also on PD. Zion just turned 7 and has apparently been very curious to meet another kid like him. His mom and I had talked and when the boys saw each other this morning they…

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Added by Phyllis Ann Talbot on November 29, 2010 at 5:43pm — 4 Comments

Shop Online at igive.com to Raise aHUS Reach $$$

Tis the season for thoughfulness as well as holiday shopping, so why not combine the two and log on to iGive.com when searching or shopping online. Every time you shop online, over 750 online retailers (like Sears, eBay, QVC, Expedia.com, BestBuy, FTD.com, Magazines.com, ToysRUs and Amazon) donate a percentage of the sale to your chosen cause, The Foundation for Children with Atypical HUS. Yes, you can still use coupons and search for the best deals - iGive.com costs nothing, yet it will do a… Continue

Added by Linda Burke on November 29, 2010 at 7:52am — No Comments

Disney On Ice and first gift

Friday night we were at the Zenith in Lille (northern France) to attend the show "100 Years of Magic" Disney On Ice. Wonderful evening. Lou-Anne took full eyes for 2 hours. It is also being told that Miss knows all the songs. We had the right to a double concert. It develops its language. Great.



Yesterday afternoon, the first year's gift from Santa Claus: a 3 DVD box set of Mickey (yes she loves Mickey). … Continue

Added by Nicolas on November 28, 2010 at 4:05am — 1 Comment

Update - Ben Aguallo

We decided to do an echocardiogram today to determine if Ben's heart had been impacted by the slight rise in recent blood pressures. The last echo was done nearly 4 weeks ago, so it was nearing the time to conduct one anway. If you recall, high blood pressure was the reason Ben went into heart failure, so letting his BPs rise was a risk. We wanted to let his BPs rise slightly to…
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Added by Jonathan Aguallo on November 24, 2010 at 8:46am — 6 Comments

Sessions about transplants at ASN

Saturday afternoon I went to a session on transplants that covered a couple of topics of interest to this community, specifically the advantages of national kidney registry chains (instead of paired swaps) and special interests in pediatric transplants.



On the first topic, National Kidney Registries is a non-profit organization started by a father (Garet Hill) searching for a kidney donor for his daughter. He and his relatives were not compatible, and the wait time for a donated… Continue

Added by Joy Lewis O'Brien on November 23, 2010 at 9:30pm — No Comments

Meeting with Dr. Loirat while at ASN

Dear all,



I had the opportunity Saturday morning to talk with Dr. Chantal Loirat, a pediatric nephrologist and researcher based in France. She told me about a recent study using Soliris (eculizumab) in adult and adolescentpatients with aHUS who are resistant to plasma therapy. …



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Added by Joy Lewis O'Brien on November 23, 2010 at 10:00am — 4 Comments

Update on Marissa.....Post-port removal

First of all I want to thank all of you for your concern in helping us make a decision in Marissa's care. I appreciate your knowledge and experiences from your own stories. Marissa's is one of three patients that her doctor is currently treating for this disease, and although I am not happy to have other going through this too, I am relieved that she is not his first.

On the morning of Friday the 12th of November, Marissa recieved one more plasma pheresis treatment, and later that…

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Added by Sharon Madrid on November 22, 2010 at 4:06pm — 8 Comments

Update

Sorry to have been out of contact...sometimes it easier to retereat when things aren't going well..I have logged onto the site to check the progress of others...I'm thrilled about Alyssa's transplant, and I just recruited an artist friend to create a bracelet for CRDN...I joined the organization, too...excited to receive a bracelet in February!

Jack was forced to switch to hemodialysis in August when a presumed leak in his peritoneal membrane ended his 3 years of peritoneal…

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Added by Dana M Simone on November 21, 2010 at 9:27pm — 12 Comments

American Society of Nephrology's annual meeting in Denver

Hello all,

I am excited to let you know that I am at the American Society of Nephrology's annual meeting in Denver, representing the Foundation and striving to be your eyes and ears regarding relevant news

and updates regarding the lives of aHUS patients. Yesterday morning I attended a poster session in which research from one study was presented about the clinical trials with Soliris (eculizumab). The crowd in front of the poster was 2-3 people deep and I had a hard…
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Added by Joy Lewis O'Brien on November 20, 2010 at 11:00pm — 3 Comments

AIRG-France

Hello,



I would like to introduce our Association: the AIRG-France



AIRG-France: Association for Information and Research on Genetic Renal Diseases.

An association of volunteers sharing values of listening, solidarity and hopes, where everyone fights for his own disease but also for the others’ diseases.



I’m a…
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Added by Nicolas on November 20, 2010 at 8:30am — 4 Comments

Update on Ben Aguallo - What a great way to start the holidays

As the Aguallo family heads into the Holidays, we are reminded of the events on April 15, 2010 and how they completely changed our lives. For the first time, our family would come to know what it was like to deal with a severly sick child. What a journey it has been for our family!

We have posted a few updates about Ben on the "Foundation" website. Most of our updates are posted on Facebook at "Get Well Ben Aguallo". However, we thought we would send a few thoughts to this…

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Added by Jonathan Aguallo on November 19, 2010 at 10:30am — 4 Comments

7,000 Bracelets for Hope - Making a Difference with CRDN

Raising awareness of kids who bravely struggle with the diagnosis of a rare disease, Nicole Boice founded the Children's Rare Disease Network with innovative ideas that work in partnership with all rare diseases, including issues of our aHUS community. From her very informative website…
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Added by Linda Burke on November 18, 2010 at 11:00pm — No Comments

November 4, 2010 Patient Advocacy Summit for AHUS

Summary of…

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Added by Cheryl Biermann on November 15, 2010 at 5:01pm — 2 Comments

Enrollment has Begun for the Pediatric Clinical Trial of Soliris

Enrollment has begun for the clinical trial of Soliris (eculizumab) for pediatric patients with atypical HUS. As an independent and unaffiliated organization devoted to education, support, and outreach for aHUS patients and families, this interactive website of the Foundation for Children with Atypical HUS recognizes that some in our community are highly interested in this trial.

On August 31, the National Institutes of Health posted an overview of the trial on…
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Added by Linda Burke on November 12, 2010 at 10:59pm — 2 Comments

On the way to Mickey Mouse

Hello USA,



We have with Belgium, formed a small group that will participate in

building the international site Eurordis / NORTH on the AHUs.
We expect the first exchanges with Eurordis.



Here everything is going well, despite a small storm, we will spend the weekend with Mickey Mouse. Two days in EuroDisney.…
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Added by Nicolas on November 12, 2010 at 4:51pm — 6 Comments

Devin's update

I know I don't post on here very often, but I thought I would let you know what's been going on in our world. I have been working to get Devin into the pediatric clinical trial of Soliris, pretty much since I heard it was going to happen. Well, tonight I checked my personal email & both the physicians at Driscoll in Corpus Christi sent me a message to contact them as soon as possible. Our nephrologist, Dr. Kher, had already filled out some paperwork and releases and sent them on to them.… Continue

Added by Paula Blanchard Lamigo on November 11, 2010 at 9:15pm — 4 Comments

Brandi's Update

It has been a little over a month since Brandi's transplant and she is doing well. We haven't had anything major accur since being released from the hospital. We have been making weekly trips to University of Iowa Hospital and Clinics, with one week being a check up with labs and the following week labs and infusion of Soliris. Brandi hasn't had any ill effects from the treatment and seems to tolerate them well. She was going to resume going to school on the 15th, but Dr. Brophy decided in…

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Added by Kathy Yates on November 11, 2010 at 3:37pm — 4 Comments

Make a Wish and Give Kids the World

Hi everyone - just wanted to let everyone know we made it back from Disney (even though Hyde kept wanting to know why we couldn't just move there!) and are slowly getting back to normal.

It was a truly once in a lifetime trip and we all had a BLAST! I can't say enough about how great these 2 organizations were and how they took care of every little thing and then some - from having all Hyde's boxes of fluids already waiting in our villa when we got there, to 'prizes' for the…

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Added by Phyllis Ann Talbot on November 11, 2010 at 7:12am — 5 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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