The Foundation for Children with Atypical HUS

Pictures of AHUS kiddos PLEASE

Hi Everyone,

 

I'm working on a new video to promote the Hike for Hyde, and had an idea to incorporate not just photos of Hyde and Bryan, but photos of as many kids as I can get to help show all the kids that the fundraiser benefits.  If anyone would be willing to send me pictures to include in my video (slide show presentation), please send me a message through this site, and I'll message you back with an email address where you can email your photos. 

 

I would love to have 1 or 2 hospital pics and 1 or 2 pics of kids being kids for each kid included. 

 

Thanks so much for taking the time to read this post and consider offering some pics to help with this special project.

 

Thanks!

Melissa Hearn

(Bryan's Mom)

Views: 67

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Comment by Donna Kolp on February 14, 2012 at 12:22am

Would love to send some pictures of Jonathan! Please let me know where I can send them too :)

Comment by Destiny Floyd-Rakes on February 9, 2012 at 7:12pm
Hello, i hope its not to late to help out with pictures. i have many of Destiny. just let me know if you still need them and where to send would love to help and i also would like to learn more about how to start a fundraiser. For the foundation and for destiny. So maybe you or anyone else can help with some pointer's, i would be ever so thankful.
Comment by Svetlana Finley on February 9, 2012 at 10:25am
I can send u some of our pictures, let me know what email to send to.
Comment by Melissa Hearn on February 6, 2012 at 5:32pm

Thanks Jonathan and Vanessa!!!!  I sent you both a friend request.  Please accept so I can send you a message with my email address.  Thanks so much for your help!!!

Comment by Vanessa Fawson on February 6, 2012 at 12:12pm
We'd be happy to. Send the email address and we will get them to you.
Comment by Jonathan Aguallo on February 4, 2012 at 8:29am

We would be more than happy to send a few pictures. Just tell me where to send them.

Comment by Melissa Hearn on February 3, 2012 at 6:33am

Absolutely!  You already have my email address right?  Anyone who needs it just message me and I'll send it.  Thanks!!!!!!

Comment by Cheryl Biermann on February 2, 2012 at 5:41pm

Can we email them Melissa?  I just sent some to Bill this way for the st

WELCOME - Friends, Family Members, Patients, and Researchers - 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.

************************

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 end the tragedy and heartbreak 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 the Foundation for Children with atypical HUS atypicalHUS.50megs.com


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:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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