The Atypical HUS Foundation

March 2015 Blog Posts (8)

Global Spotlight – India’s First Ever Dialysis Olympiad!

Check out what our friends in India did back in February.  We all know that dialysis can be very hard on the body and keep you from doing every day activities let alone any kind of exercising.  Well our friend Kamal Shah who runs the Atypical HUS India Foundation is also the co-founder of NephroPlus which is India’s leading dialysis network provider.  And NephroPlus organized the first ever Dialysis Olympiad in India that was held on Feb 15, 2015.  It was a huge…

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Added by Jeff Schmidt on March 29, 2015 at 9:30pm — 7 Comments

San Antonio, Texas regional meeting

Here is my very first blog on my very first speaking engagement at an aHUS Regional meeting. I wanted to get more involved, so I stepped out of my comfort zone after being a stay-at-home mom for the past 12 years, got on a plane and flew to beautiful San Antonio Texas.



Global Genes hosted the regional meeting on March 13-14, 2015, in San Antonio Texas. I love that our regional meetings are held at fabulous destinations, in great hotels with delicious food.



Friday night… Continue

Added by Diane schaller on March 29, 2015 at 11:41am — 2 Comments

Regional Meetings Across the US

     The 2015 aHUS Regional Meetings are underway with attendance opportunities in 14 states. Each meeting will have a physician specialist that will discuss aHUS topics and answer questions in a group setting. There will also be guest speakers who provide insight and knowledge on nutrition, exercise, and strategies for dealing with aHUS. You’ll also have the opportunity to meet others who are affected by aHUS‐ whether they are patients (children and adults), parents, siblings, or…

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Added by Lisa Grooms on March 28, 2015 at 7:41pm — 2 Comments

Doc to Doc Directory - Physicians who Advocate for the BEST CARE for aHUS Patients

Concerned about getting the best care possible for aHUS patients?

If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient.  Let your doctor know about the Doc…

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Added by Linda Burke on March 26, 2015 at 10:30am — No Comments

aHUS and Genetics

 “How to Discuss Genetic Disease with Your Loved Ones” Global Genes sponsors an online event on April 1st at 11am PT/ 2PM ET.  No fooling – don’t miss this webinar!  Email your questions prior to the event, and learn more about genetics and rare disease diagnoses.  FMI and to register your participation, see http://globalgenes.org/april2015webinar/…

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Added by Linda Burke on March 16, 2015 at 2:00pm — No Comments

Global aHUS News - Spotlighting Spain / Global aHUS Noticias - Poner de relieve España

Our friends in Spain have been busy raising awareness for aHUS!  That not only helps those in Spain with aHUS but it helps all of us.  We are a global family and need to support each other.



They have been taking plenty of pictures of those supporting aHUS awareness wearing wristbands promoting their aHUS website (remember our Australian friends holding up #saveaHUSlives signs?).  Here are some of pictures of the…

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Added by Jeff Schmidt on March 8, 2015 at 3:30pm — No Comments

20 aHUS Regional Meetings across America - Plan to Attend!

   The 2015 aHUS regional meetings, hosted by NORD and Global Genes, are events designed to help you learn about aHUS from medical experts, to connect with other families who are challenged by aHUS, and to explore options and resources available to patients and their families. 

     Are you a newly diagnosed aHUS patient?  Have you spent years being challenged by aHUS issues or are a caregiver with ongoing concerns about how to optimize aHUS treatment for your loved one?  Feeling…

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Added by Linda Burke on March 4, 2015 at 9:00pm — 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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