The Atypical HUS Foundation

Phyllis Ann Talbot's Discussions (43)

Discussions Replied To (42) Replies Latest Activity

"Awesome Len! "

Phyllis Ann Talbot replied Oct 29, 2014 to ADULTS with aHUS

191 May 15
Reply by Donnan Oyler

"Thanks for starting Kamal!  Great idea!  Haven't 'spoken' with you in awhile but kno…"

Phyllis Ann Talbot replied Oct 27, 2014 to aHUS India

9 Nov 21, 2014
Reply by Kamal D Shah

"Len - SO great to meet you in person - not just via SKYPE ;-)!  And thanks for the a…"

Phyllis Ann Talbot replied Oct 27, 2014 to ADULTS with aHUS

191 May 15
Reply by Donnan Oyler

"Hi Kristen - they haven't discussed the kidney transplant with Soliris therapy optio…"

Phyllis Ann Talbot replied Apr 16, 2014 to Complement Factor I

6 Jun 3, 2014
Reply by Kristen Bruner

"Hi Jennifer - ughhh we also had major issues with our school getting Hyde's 504 in p…"

Phyllis Ann Talbot replied Mar 27, 2014 to Got part of genetic testing back

4 Mar 31, 2014
Reply by Cheryl Biermann

"Hey everyone  sorry to 'horn in' on your adult discussion ;-)  But Len, I read yours…"

Phyllis Ann Talbot replied Apr 11, 2013 to ADULTS with aHUS

191 May 15
Reply by Donnan Oyler

"Kerry - Hi - you will get through this!  We really do all know what you are going th…"

Phyllis Ann Talbot replied Feb 20, 2013 to New to aHUS & petrified :(

14 Feb 21, 2013
Reply by debbie thelwell

"ha ha ha - thanks Len!  we wanted to keep it consistent  -one Bill to another ;-). …"

Phyllis Ann Talbot replied Jan 30, 2013 to FOUNDATION DIRECTOR ANNOUNCEMENT

3 Jan 30, 2013
Reply by Phyllis Ann Talbot

"We have a port for Hyde and LOVE it - it allows me to do his infusions at home mysel…"

Phyllis Ann Talbot replied Dec 28, 2012 to Port or no Port....

9 Jan 1, 2013
Reply by Donna Kolp

"Hey - yes!  I would push for it - ours was awhile to get the home health set up (the…"

Phyllis Ann Talbot replied Dec 13, 2012 to home health infusions for Soliris

25 Feb 13, 2013
Reply by Cheryl Biermann

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IN REGARD TO MEMBERSHIP REQUESTS

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

The Atypical HUS Foundation 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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.

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 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...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


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

The Atypical HUS Foundation
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 info@atypicalhus.org

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