The Atypical HUS Foundation

Donate

 

 

You can help us support aHUS research !

 

EVERY DOLLAR COUNTS !  Your donation funds efforts to foster improved outcomes for aHUS patients through research and via education for patients, families, and physicians.  The Atypical HUS Foundation, a 501(c)3 non-profit, welcomes donations of any amount, whether online or via mailed check, and are happy to provide documentation for employers who offer 'matching gifts' to charitable organizations.   Consider organizing an aHUS fundraiser and/or rare disease awareness event - FMI contact the Crystal Ferreira at fourferreiras@att.net. 

 

DONATE online (links provided below), with a mailed donation to this address, or support us via the aHUS Pearl Bracelet.

 

Donations may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

Contact info for Deborah Lewis,    E: act-cpa@swbell.net   Ph:  314-363-1040

Our organization's FINANCIAL REPORTS, and other documents, are available upon request from Deborah A. Lewis CPA, MBA 

Read our MISSION STATEMENT

Hunter B. Burke

Educational Scholarship

In 2016 The Atypical HUS Foundation announced a memorial scholarship, open to all aHUS patients enrolled in higher learning, and named in honor of Hunter Burke (2002-2008).

Donations may be made online via PayPal (button at bottom of this page) or a mailed check payable to The Atypical HUS Foundation and marked "Hunter Burke Scholarship" to note your wish to earmark a contribution to support this educational scholarship fund.  

Donation mailing address and charitable 501c3 status are provided below, and D. Lewis may be contacted to provide further details.  The Burke family joins with The Atypical HUS Foundation to appreciate your support of this scholarship to build a brighter future for aHUS patients in higher education.

We appreciate your support, either with a mailed check or your PayPal donation, using the button at the end of this page.

The Atypical HUS Foundation

Hunter Burke Educational Scholarship

c/o Deborah Lewis
PO Box 333
Barnhart, MO 63012

Contact info for Deborah Lewis,    E: act-cpa@swbell.net   Ph:  314-363-1040

The organization's FINANCIAL REPORTS, and other documents, are available upon request from Deborah A. Lewis CPA, MBA 

The Atypical HUS Foundation is a 501c3 nonprofit organization

in compliance with IRS guidelines. 

Donations are deductible to the extent allowable by law.

 

LOOKING FOR A SPECIAL (and meaningful) GIFT?  

Consider supporting aHUS families by sending someone special this beautiful aHUS pearl bracelet.

Custom made, so please email D Lewis at act-cpa@swbell.net for availability prior to your order.

 

These beautiful freshwater pearl bracelets were commissioned especially for The  Atypical HUS Foundation. Your gift of $295.** will directly fund research and outreach support specifically tailored to benefit aHUS patients and their families.

(In compliance with IRS regulations, your donation of $295**. to receive this bracelet is not tax-deductible. Note for INTERNATIONAL Shipping, Outside USA: ** Add $25. for bracelets to be shipped outside of the USA, for a total of $320. )

Ordering Note:  This makes a great Gift! Delight a loved one with this real pearl bracelet, 7.5 inches of AAA pearls accented by 14K gold clasp and 'aHUS' engraved tag. 

Pearl bracelets are custom made-to-order, so please be aware of a 4 to 6 week window between receipt of your bracelet order and shipment.  Questions?  Please email act-cpa@swbell.net .

Why the Black Pearls?  A healthy individual's genetic profile of this protein structure would be symbolically represented by twenty pure white pearls, yet the aHUS bracelet is composed of five balck pearls at the bracelet's end.  In aHUS patients, the area of the protein providing the body protection from damage, SCR 16 to SCR20, has genetic mutations that cause aHUS and thus is indicated by the black pearls in the 16th to 20th positions.

 

Please click "Buy Now" to receive an aHUS Pearl Bracelet for your $295. donation, or click "Donate" to make a monetary gift in any amount by credit card.. Every dollar will help aHUS research supported by The Atypical HUS Foundation.  (FMI about aHUS, also see atypicalHUS.net.)

Please NOTE:  

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.   Contact info@atypicalhus.org with your questions or request.

For those that really want to do more, why not organize a Black & White Ball or other awareness event in your local community and use the bracelets as a fundraising tool.

The Atypical HUS Foundation encourages patients, families and investigators to share information and explore options/resources as we work together to gain insight into this rare and complex disease.  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 aHUS.  

 The Atypical HUS Foundation is a 501c3 nonprofit organization

in compliance with IRS guidelines. 

Donations are deductible to the extent allowable by law.

 

 

 

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service