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:…
Added by Nicolas on November 30, 2010 at 4:23pm —
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 —
Hi there everyone, Continue
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…
Added by Phyllis Ann Talbot on November 29, 2010 at 5:43pm —
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 —
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 —
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… Continue
Added by Jonathan Aguallo on November 24, 2010 at 8:46am —
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 —
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. …
Added by Joy Lewis O'Brien on November 23, 2010 at 10:00am —
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… Continue
Added by Sharon Madrid on November 22, 2010 at 4:06pm —
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… Continue
Added by Dana M Simone on November 21, 2010 at 9:27pm —
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… Continue
Added by Joy Lewis O'Brien on November 20, 2010 at 11:00pm —
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… Continue
Added by Nicolas on November 20, 2010 at 8:30am —
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… Continue
Added by Jonathan Aguallo on November 19, 2010 at 10:30am —
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… Continue
Added by Linda Burke on November 18, 2010 at 11:00pm —
Added by Cheryl Biermann on November 15, 2010 at 5:01pm —
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… Continue
Added by Linda Burke on November 12, 2010 at 10:59pm —
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.… Continue
Added by Nicolas on November 12, 2010 at 4:51pm —
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 —
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… Continue
Added by Kathy Yates on November 11, 2010 at 3:37pm —
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… Continue
Added by Phyllis Ann Talbot on November 11, 2010 at 7:12am —