The Atypical HUS Foundation

sabrina molinari ,Isabella Pagan
  • Female
  • Rochester, NY
  • United States
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Sabrina molinari ,Isabella Pagan's Friends

  • Megan Russo
  • Linda Burke
 

sabrina molinari ,Isabella Pagan's Page

Latest Activity

Linda Burke left a comment for sabrina molinari ,Isabella Pagan
"Hi Sabrina, Hope things are going well for you and your family.  We have a new member who will soon be visiting the Tampa area and would like to see a physician - Lisa Grooms was kind enough to remind me that you are not far from Tampa. …"
Apr 14
sabrina molinari ,Isabella Pagan left a comment for Linda Burke
"I will definitely post the link for everyone an yes I did see the event for fl I'm going be going to the Tampa one ;)"
Feb 27, 2015
Linda Burke left a comment for sabrina molinari ,Isabella Pagan
"Hi Sabrina, Fabulous news, I can't wait to see the news story from your Ft. Meyer's FOX News story.  I hope that you'll post that link on our Foundation's Facebook page and here as well, since there's a video box right…"
Feb 27, 2015
sabrina molinari ,Isabella Pagan left a comment for Linda Burke
"Hello I would just like to share since tomorrow is rare disease day fox news in fort myers FL is going to be telling my daughter story with ahus"
Feb 27, 2015
sabrina molinari ,Isabella Pagan and Megan Russo are now friends
Feb 27, 2015
Linda Burke and sabrina molinari ,Isabella Pagan are now friends
May 12, 2014
sabrina molinari ,Isabella Pagan shared ALPHA MARKETING's video on Facebook
Aug 29, 2013
Linda Burke left a comment for sabrina molinari ,Isabella Pagan
"Hi Sabrina, As your sweet baby girl has been diagnosed with aHUS just recently, you might want to see our article on aHUS basic information, our 'aHUS Bootcamp" viewable at http://atypicalhus.ning.com/page/a-parents-perspective-ahus…"
Aug 28, 2013
sabrina molinari ,Isabella Pagan is now a member of The Atypical HUS Foundation
Aug 28, 2013

Profile Information

Birthday
July 28
Do you have a friend or family member diagnosed with aHUS?
Yes
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
Yes
My membership request involves business interests as I seek additional aHUS information for business applications.
support an more information my daughter has ahus
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Comment Wall (3 comments)

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Join The Atypical HUS Foundation

At 9:44am on April 14, 2017, Linda Burke said…

Hi Sabrina,

Hope things are going well for you and your family.  We have a new member who will soon be visiting the Tampa area and would like to see a physician - Lisa Grooms was kind enough to remind me that you are not far from Tampa.  Hoping that you'd be kind enough to say hello and share physician info with him http://atypicalhus.ning.com/profile/SantoshSuryawanshi

At 11:01am on February 27, 2015, Linda Burke said…

Hi Sabrina,

Fabulous news, I can't wait to see the news story from your Ft. Meyer's FOX News story.  I hope that you'll post that link on our Foundation's Facebook page and here as well, since there's a video box right on this site's Home Page.  

Did you see the aHUS meetings in our Event tab for Florida?

At 11:29pm on August 28, 2013, Linda Burke said…

Hi Sabrina,

As your sweet baby girl has been diagnosed with aHUS just recently, you might want to see our article on aHUS basic information, our 'aHUS Bootcamp" viewable at http://atypicalhus.ning.com/page/a-parents-perspective-ahus .  I'm not familiar with the Strong Memorial Hospital in Rochester, NY but hope that Dr. Varade and the rest of your Isabella's care team have given you information and options to explore.  Feel free to check out various areas of the website, and to blog or comment so that you can connect with others for shared insights into aHUS challenges.


 
 
 

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.

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

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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