The Atypical HUS Foundation

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 success.  

Here are some pictures from the event.

 

If you want to see more, go to Kamal’s blogs

http://www.kamaldshah.com/2015/02/dialysis-olympiad-get-set-go.html

http://www.kamaldshah.com/2015/02/a-stupendous-success.html

 

And here is a link to his awesome dialysis network provider, NephroPlus.

http://www.nephroplus.com/

 

The Atypical HUS India Foundation website is here.

http://ahus.in/

 

And here is the Atypical HUS India Foundation Facebook page for India.  Please go to it and Like it.  Let’s give Kamal and all our aHUS friends in India our support!

https://www.facebook.com/atypicalhusindia?fref=ts

 

And to see all of Kamal’s blogs you can go here.

http://www.kamaldshah.com/

 

Thanks Kamal for letting me show all your outstanding work.  I would love to discover ways to help those in India with aHUS get access to Soliris.  I realize the cost of Soliris and the IP (intellectual property) laws are keeping that from happening right now.  But I would love to help figure out a way to get past that.

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Comment by Kamal D Shah on April 3, 2015 at 9:47am

Thanks Grace!

Comment by Jeff Schmidt on April 3, 2015 at 8:37am

Hi Grace my fellow Pennsylvanian!  What a great idea having the Dialysis Olympiad!  :)

Comment by Grace on April 2, 2015 at 8:43pm

Great work, Kamal! I wish I'd been there ;)

Thanks for sharing, Jeff.

Comment by Kamal D Shah on April 1, 2015 at 8:36pm

Oh yes Cheryl. We had people from all over the country. We enjoyed ourselves as well!

Comment by Cheryl Biermann on April 1, 2015 at 9:30am
That looks like so much fun! India is such a large country, did you have people from all over? I hope the organizers were able to enjoy it too!
Comment by Jeff Schmidt on March 31, 2015 at 9:48am

It was my pleasure Kamal.  Thank you for all you are doing in India!

Comment by Kamal D Shah on March 31, 2015 at 2:23am

Thanks so much for posting this Jeff!

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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.

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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...

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