The Atypical HUS Foundation

August 2015 Blog Posts (7)

aHUS Alliance reports on the July 2015 Innsbruck Conference

     As part of its mission to work with International aHUS researchers, the aHUS Alliance was represented by Len Woodward (UK rep. to the aHUS Alliance federation of nations, from aHUSUK) at the 5th HUS International HUS and Related Diseases Conference in Innsbruck.  His report, Continuing to Learn about aHUS, is of high interest to the aHUS community worldwide as…

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Added by Linda Burke on August 28, 2015 at 11:30pm — No Comments

aHUS Awareness Day, September 24, 2015 Video Project

Calling all Americans!  The first ever aHUS Awareness Day is coming up fast.  It is September 24, 2015.  The world is joining together that day to raise awareness for aHUS.  

The global theme for aHUS Awareness Day is ‘Communication’.   There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and…

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Added by Jeff Schmidt on August 24, 2015 at 7:30pm — No Comments

Columbus, Ohio Atypical HUS Meetup

Wow! That is all I can say after an incredible weekend in beautiful Columbus, Ohio with some of the greatest people I know - aHUS family! This was by far the largest meetup I've been to that was sponsored by Global Genes. Friday night was a delicious dinner with great conversation at each table. I was excited because I didn't know any of the attendees from beforehand. I met wonderful people of all ages and life experiences all brought together by one crazy life changing diagnosis. Each table…

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Added by Anne Bruns on August 24, 2015 at 3:26pm — No Comments

aHUS Regional Meetings - Update

     As summer winds down, it's time to think about reserving a spot at one of the 5 remaining aHUS regional meetings.  I'm looking forward to meeting friends old and new in Chicago on September 18th at the Friday night Welcome Dinner, then having a great event during the day on Saturday the 19th.  

     Medical expert Dr. Bradley Dixon will offer information about aHUS, then answer questions - a great opportunity for patients and families!  These meetings are free, with one night's…

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Added by Linda Burke on August 17, 2015 at 6:00am — 1 Comment

NEW Biomarker Study announced by U of Iowa

     The University of Iowa's MORL team has just announced an innovative study that will provide researchers a better understanding  of atypical HUS, from when a patient’s aHUS first appears (acute phase) to when aHUS is brought under control (chronic phase). 

 

     Since rare disease populations are relatively small, especially true with aHUS patient numbers, we’re sending out a ‘Call to…

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Added by Linda Burke on August 14, 2015 at 11:30pm — 1 Comment

Ports

Has anyone have or had complications with ports?  Like pain surrounding it, trouble getting it accessed? Our son has a lot of pain with the pressure when the have to access the port for Solaris that it becomes really traumatic for him. Last time the nurses couldn't even access it and had to do an IV through the arm. 

Thanks!

Added by Terry Huber on August 9, 2015 at 9:46pm — 4 Comments

Athletes/Atletas/Athlètes Across the Globe Raising Awareness for aHUS and Other Rare Diseases

I’d like to introduce you to some athletes from across the world who are making a difference by raising awareness for aHUS and other rare diseases.  We often think of athletes as selfish and only being interested in making money.  But I’d like to show you some athletes who are showing what incredible role models they are.

Me gustaría presentarles a algunos atletas de todo el mundo que están…

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Added by Jeff Schmidt on August 6, 2015 at 7:02pm — No Comments

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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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