The Atypical HUS Foundation

December 2014 Blog Posts (15)

Fierce Foods Academy by Maxlove Project

Happy New Year aHUS families. I encourage you to take a look at Fierce Foods Academy by Maxlove Project. Their sweet boy Max was diagnosed with brain cancer 3 years ago. They have done amazing work to help kids fighting cancer and life threatening conditions with whole-body wellness resources, education and research.

By registering and/or liking their Facebook page you will receive great information, recipes, and nutritional information.…



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Added by Diane schaller on December 29, 2014 at 10:35pm — No Comments

Global aHUS News - 12/29/2014

Our friends in Spain are looking for help in supporting the biggest and most important research team in Spain, which ASHUA has collaborated with for a long time.  In this particular project, the researcher Dr. Santiago Rodriguez de Cordoba, would like to create a database about all the patients screened by them, and from that, try to identify how to customize the aHUS treatment for every patient.  To learn more about the research effort and how you can help go to the following link.  (To…

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Added by Jeff Schmidt on December 29, 2014 at 7:58am — No Comments

Understanding Clinical Trials: Basic Terms

When you read about a new drug under study, there are several steps before a drug makes it to market. So what does it all mean?

 

While guidelines may be similar in other countries, this information is adapted from two US government websites, and pertains specifically to trials registered in the US. For more information see:

http://www.clinicaltrials.gov/ct2/about-studies/learn…

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Added by Grace on December 25, 2014 at 12:00pm — 1 Comment

New Complement Inhibitors: Where do they act and does it matter?

One of our members has asked what effect the level of targeted complement inhibition (upstream/early or downstream/late in the cascade) has on the risk of infection. As several new complement inhibitors are under development, most targeting a different component than C5 targeted by Soliris®, this is a practical concern moving forward. I think the relative risks and benefits of alternative drug targets is a fascinating question, and one that has been on my mind as well, and unfortunately one…

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Added by Grace on December 24, 2014 at 9:00pm — No Comments

Watch this Frozen Parody. It will make your day!

http://m.youtube.com/watch?v=EtAG3e3JLNI&sns=

If you can't find it, search Frozen Parody I Don't Know.

It's how I felt when the doctors didn't have a clue about what I had.

Added by Lisa Stockdale on December 23, 2014 at 9:35pm — No Comments

Jigsaw Puzzles – A Life Lesson?

     Shouldn’t I really be doing something more productive this busy time of year?  Probably - but in a sunny nook of our home, my 10 year old son and I are working on a 1000 piece jigsaw puzzle.   It’s a fun and relaxing way to use those tiny odd bits of time ‘in between’ life’s activities and obligations.  It suddenly struck me while pondering those tiny pieces:  Working on a jigsaw puzzle is a lot like trying to sort out life’s issues.

     We usually have a pretty…

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Added by Linda Burke on December 21, 2014 at 8:43pm — 1 Comment

Season of Giving

 As difficult as it has been at times, the world of aHUS has also brought us new friendships. In these last two weeks as we continue to support each other in reaching our $10k goal for the aHUS Foundation (that will be matched dollar for dollar), We offer you the opportunity to purchase a t-shirt designed by our…

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Added by Donna Kolp on December 18, 2014 at 12:42pm — 1 Comment

Meet Some of the aHUS Faces Around the Globe

AUSTRALIA:

Check out the following link to see the faces and stories of some of our Australian friends.  Things have changed for some of them as Soliris is now available as of Dec. 1 to those their government says are in urgent need.  Others are still waiting and need to relapse to receive Soliris.  Take a moment to get to know these aHUS warriers.



http://ahusaustralia.org.au/faces-of-ahus/

 

Big…

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Added by Jeff Schmidt on December 17, 2014 at 8:03pm — 6 Comments

My Journey with aHUS

First off, my name is Megan, I am a college student, a dedicated worker, a sister, a daughter, a friend, and LASTLY a patient. I do not let aHUS define me and while I acknowledge that I have it and have limitations, I also don't let it control my life. I was diagnosed the summer of my sophomore year in college, and just finished my fall semester of my junior year. I typically take 18 credits, although this semester I only took 15. However I also have three jobs on top of my frequent doctors…

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Added by Megan Russo on December 15, 2014 at 9:00pm — 4 Comments

Helping Our Global aHUS Friends



As I mentioned last week our Canadian friends are still waiting for their government to provide access to Soliris (except in Quebec where their government has approved it). aHUS Canada has an awesome email tool to make it easy for anyone to send emails to the various Premiers and Health Ministers. I encourage everyone to help our Canadian friends by using the email tool. It's easy as they have provided a template you can use. But what will make the email more impactful is if you add…

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Added by Jeff Schmidt on December 10, 2014 at 9:01pm — No Comments

1st International aHUS Awareness Day - September 24th, 2015

     The global aHUS Alliance today announced that  September 24, 2015 has been declared as the first annual International aHUS Awareness Day.   World Rare Disease Day is marked each year on the last day of February, when the media spotlight can lend awareness to an estimated 7000 rare diseases and on those challenged by those diagnoses.  Patient organizations in the UK, America, Spain, France, Canada and other nations have joined together in…

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Added by Linda Burke on December 4, 2014 at 9:00am — No Comments

New Complement Inhibitors in the Pipeline: TNT009 and CCX168

Lisa and Linda recently brought two new drugs to my attention, and much of the following information is cross-posted from the "Potential New Treatments" forum.

TNT009 is a humanized antibody which inhibits C1s, one of a series of proteins which bind to antibody-antigen complexes and activate the classical pathway of complement, under development…

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Added by Grace on December 3, 2014 at 9:30pm — 2 Comments

aHUS News From Around the World



This is news AHUSUK has been waiting for.  On November 27, 2014, the National Institute for Health and Care Excellence (NICE) made public its Final Evaluation Determination (FED) for eculizumab (Soliris) for aHUS.  Congratulations to all of our friends in the UK.  This has been a long time coming!  Check the link for details.

 …

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Added by Jeff Schmidt on December 3, 2014 at 8:37pm — 4 Comments

Silent Rippling Circles

When we blog an aHUS Awareness piece or a Season of Giving blog our musings reach our own small circle of friends, when we share our friends pieces our circle inter locks with another circle of friends' ripples! Let's fill an ocean with interlocking ripples! Join the aHUS Team, blog and share! Let's reach our December goal! Go Team!

Added by Cheryl Biermann on December 2, 2014 at 11:07am — No Comments

Global Genes - RARE TOOLKITS

     The Las Vegas aHUS Meetup is coming up this weekend, and those attending will hear great presentations by Dr. Rita Swinford (aHUS medical update), Dr Maya Doyle (navigating challenges), and Barb Farcher (representing The Atypical HUS Foundation).   Global Genes is hosting this last aHUS regional meeting of 2014, and we hope to hear announcements soon from both NORD and Global Genes concerning aHUS regional meeting locations and dates for 2015.  What a terrific support these 2014…

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Added by Linda Burke on December 1, 2014 at 7:30pm — No 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.

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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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