The Atypical HUS Foundation

ALPHA MARKETING
  • Female
  • Raleigh, NC
  • United States
Share on Facebook Share Twitter

ALPHA MARKETING's Friends

  • Cheryl Biermann
  • Svetlana Finley
  • Steve Greene
 

ALPHA MARKETING's Page

Latest Activity

ALPHA MARKETING posted a page
Wednesday
Cheryl Biermann commented on ALPHA MARKETING's video
Thumbnail

aHUS Informational Slideshow 2013

"Love that the pics included our multi national family!"
Feb 28, 2013
ALPHA MARKETING posted a video
Feb 27, 2013
ALPHA MARKETING posted a page
Jul 10, 2012
ALPHA MARKETING posted a page

aHUS en Espanol

please click here for the Brochure please click here for the one page summary
Jun 6, 2012
ALPHA MARKETING posted a page
Jun 6, 2012
ALPHA MARKETING posted a video
Tricky Britches plays their song "A Rare One" at Local Sprouts in Portland, Maine in support of international Rare Disease Day.

A Rare One

Tricky Britches plays their song "A Rare One" at Local Sprouts in Portland, Maine in support of international Rare Disease Day.
Jan 23, 2012
ALPHA MARKETING shared a profile on Facebook
Dec 6, 2011
ALPHA MARKETING posted a status
"testing the system: 9-29 at 10:58am"
Sep 29, 2011
ALPHA MARKETING posted a status
"testing the system: 9-28 at 10:42am"
Sep 28, 2011
ALPHA MARKETING posted a status
"testing the system: 9-28 at 9:50 am"
Sep 28, 2011
ALPHA MARKETING updated their profile
Aug 29, 2011
ALPHA MARKETING updated their profile photo
Aug 29, 2011
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

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

ALPHA MARKETING's Videos

  • Add Videos
  • View All

ALPHA MARKETING's Blog

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 Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

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)
 
 
 

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.

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

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


Badge

Loading…

© 2014   Created by ALPHA MARKETING.   Powered by

Badges  |  Report an Issue  |  Terms of Service