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…Continue
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…Continue
Added by Linda Burke on October 25, 2011 at 12:00pm — No Comments
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…Continue
Added by Cheryl Biermann on October 21, 2011 at 1:08pm — No Comments
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?!
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.
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…Continue
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…Continue
Nathan has blood in his urine tonight, maybe from jogging, maybe it's from the stint?
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…Continue
Added by Cheryl Biermann on October 4, 2011 at 3:05pm — No Comments
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…Continue