The Foundation for Children with Atypical HUS

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Cheryl Biermann left a comment for ALPHA MARKETING
"Christy, I do not believe I've ever thanked Alpha Marketing for this outstanding site, a serious over-site.  If, I ever hear of anyone needing a site, you can be sure Alpha Marketing will get a plug from me! Thanks!      "
Dec 17, 2010
Nicolas left a comment for ALPHA MARKETING
"Christy thank you for creating this site. It takes an international scale. Bravo."
Nov 28, 2010
Linda Burke left a comment for ALPHA MARKETING
"Happy New Year, Christy! One of our biggest blessings this year has been the creation of this website for aHUS patients and families - thank you for all your hard work involved in creating this site, and the whole Alpha Marketing team involed in…"
Jan 1, 2010
Phyllis Ann Talbot left a comment for ALPHA MARKETING
"Thanks Christy - I'll check with him - I know the file size is less then 100 MB - he thinks he had it figured out - I'll yell if it doesnt work tonight n- hope it does - came out REALLY well I think."
Dec 16, 2009
ALPHA MARKETING left a comment for Phyllis Ann Talbot
"Hi Phyllis, Can you tell me what the video file extension is? The site supports the following file size and type: Files must be 100MB or smaller. We support .mov, .mp4, .mpg, .avi, .3gp, .3g2 and .wmv file formats. If that's not it, let me…"
Dec 16, 2009
Phyllis Ann Talbot left a comment for ALPHA MARKETING
"Christy - have a technical question - I have an amazing video that a friend of my brother's did for us for our Hike coming up in the spring. He tried to upoad the video tonight to this webpage and thought it was working but we got an e-mail…"
Dec 15, 2009
ALPHA MARKETING posted a blog post

How to Get and Use Your aHUS Badge

Hi All,I have been getting some feedback that people are having issues getting their Badge to work. So, I have put together a pdf with instructions on making and using them. Just click on the link below.I hope you all get out and use them. They are great for letting people know about the site.Thanks,ChristyBadge Instructions.pdfSee More
Aug 22, 2009
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ALPHA MARKETING left a comment for Linda Burke
"Thanks Linda. That means a lot. This project has been really fun and has been educational for me as well. I know the site will get better and better and will hopefully help many more families. Christy"
Jul 17, 2009
Linda Burke left a comment for ALPHA MARKETING
"Christy, As we look over the past month since this aHUS interactive website has launched, I am amazed at how your fine work has positively affected the world of our aHUS families. By connecting us to share information and support, we can explore…"
Jul 16, 2009

Profile Information

Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Question Does Not Apply To My Situation

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How to Get and Use Your aHUS Badge

Hi All,



I have been getting some feedback that people are having issues getting their Badge to work. So, I have put together a pdf with instructions on making and using them. Just click on the link below.



I hope you all get out and use them. They are great for letting people know about the site.



Thanks,

Christy…



Continue

Posted on August 22, 2009 at 8:49pm

ALPHA Marketing and aHUS

Our team at ALPHA was very fortunate to be able to create this social network for the families and communities dealing with atypical HUS. We hope you all find it a useful place to share, get advice and support, increase awareness, and raise money to help these families.



If you or someone you know is looking for help setting up their own social network, please let us know. We would love to help.



Thanks,

Christy



Christy White,

Creative… Continue

Posted on May 9, 2009 at 11:30am

Comment Wall (7 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 8:26pm on December 17, 2010, Cheryl Biermann said…

Christy,

I do not believe I've ever thanked Alpha Marketing for this outstanding site, a serious over-site.  If, I ever hear of anyone needing a site, you can be sure Alpha Marketing will get a plug from me!

Thanks!

 

 

 

At 4:30pm on November 28, 2010, Nicolas said…
Christy thank you for creating this site.
It takes an international scale.
Bravo.
At 4:34pm on January 1, 2010, Linda Burke said…
Happy New Year, Christy!
One of our biggest blessings this year has been the creation of this website for aHUS patients and families - thank you for all your hard work involved in creating this site, and the whole Alpha Marketing team involed in this amazing endeavor!
At 12:23pm on December 16, 2009, Phyllis Ann Talbot said…
Thanks Christy - I'll check with him - I know the file size is less then 100 MB - he thinks he had it figured out - I'll yell if it doesnt work tonight n- hope it does - came out REALLY well I think.
At 8:13pm on December 15, 2009, Phyllis Ann Talbot said…
Christy - have a technical question - I have an amazing video that a friend of my brother's did for us for our Hike coming up in the spring. He tried to upoad the video tonight to this webpage and thought it was working but we got an e-mail saying that the upload did not complete due to a conversion error? The title of the video is Hike4Hyde? Any help would be greatly appreciated.
At 11:57pm on July 16, 2009, Linda Burke said…
Christy,
As we look over the past month since this aHUS interactive website has launched, I am amazed at how your fine work has positively affected the world of our aHUS families. By connecting us to share information and support, we can explore common experiences and gain insight into treatment options for our loved ones. Additionally, we can now actively help our child's doctors to connect with other medical personnel who have experience with specific topics dealing with aHUS issues.
I know other families and friends join me in extending our deepest thanks for creating this website - it rocks!
At 8:50pm on July 15, 2009, Vicki Ravely said…
Thank you Christy and ll else involved with this project. We distant families are grateful to see photos of other A-typical HUS patient's and their families. We don't know a single other patient, except a little information through our wonderful doctor's at Children's Hospital in Seattle. Vicki Ravely and family (Paul's family)
 
 
 

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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