The Foundation for Children with Atypical HUS

Another successful NORD event in New Jersey!

Back from New Jersey where Steven and I attended the second (I hope annual) NORD event for aHUS patients and families. We met some great people at the kick-off dinner Friday night and conversation was lively and constant. For many, it was the first time meeting others fighting the same fight and celebrating the same victories.

On Saturday, about 30 of us gathered for an educational presentation from Dr. Ken Lieberman, an aHUS expert. Dr. Lieberman speaks very conversationally and his segment quickly evolved into a much appreciated Q&A.

Lisa Phelps, NORD and Sandy Pelkey, Alexion also presented, offering valuable information and patient and caregiver resources.

I was honored to speak on behalf of The Foundation for Children with Atypical HUS and hope that we soon see new faces onboard. We definitely want to keep the conversation flowing!

The majority of patients present had adult onset aHUS and several had just been diagnosed this year. Almost everyone is being treated with Soliris.

We learned that today, the time span between symptoms, diagnosis and treatment is about a week. This is an amazing breakthrough, and proof that new medical research and answers are always in the works.

Many thanks to NORD for providing patients and families time to meet and bond. The opportunity to hear from experts, in a safe setting, together, is invaluable.

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Comment by Barbara Farcher on June 6, 2014 at 10:39am

As everyone already said, Dana was a great representative for the foundation.  This was my third meet up and still came away with a wealth of information not to mention meeting other patients and families is always such a gift!  We are lucky to have so many dedicated people providing us with such valuable events. 

Comment by Phyllis Ann Talbot on June 4, 2014 at 2:20pm

Thanks to YOU Dana for representing the Foundation so well!  We truly appreciate it!

Comment by Chris R on June 3, 2014 at 2:14pm

Agreed. Thanks to NORD and Alexion for a wonderful event that provided a wealth of information and an opportunity to get to know other families in the same situation.  Thank you, Dana, for all the information you provided, too.

Comment by Daniel Sternfeld on June 2, 2014 at 1:41am

I also want to thank NORD and Alexion for a great forum for patients and their families/partners to learn more about aHUS and share experiences. Thank you Dana for your work with the Foundation and your support for those with aHUS and kidney disease.

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from Linda@atypicalhus.org.

The Foundation for Children for Children with Atypical HUS 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 Linda@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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