The Atypical HUS Foundation

Fundraising DETAILS

We value those who wish to support aHUS research

with a fundraising effort.

Here are a few guiding principles to keep in mind.

  • The Atypical HUS Foundation is registered as a 501(c)3 non-profit organization and is in compliance with those and IRS regulations.


  • All fundraisers are approved by our organization's Director and Board after a review of the scope of the fundraiser.


  • Fundraising efforts MUST registered with our organization's accountant,  Deborah Lewis. Lead volunteers for these efforts provide information about the fundraiser's progress, and adhere to certain financial checks and balances that are simple yet effective at protecting donors and all others involved.


  • No individual or group is permitted to use the name, tax exempt status, graphic images, or other attributes without prior written approval and permission of The Atypical HUS Foundation and its representatives.


  • Fundraisers benefiting a specific patient, family, or other organization are sometimes permitted to use the name of The Atypical HUS Foundation when aHUS research fundraising is a key part of their stated goals.  Prior written authorization is required to maintain our organization's compliance with regulations specific to our status as a 501c3 non-profit.

Please CONTACT The Atypical HUS Foundation

FMI about Fundraisers at:

Deborah Lewis    E:   Ph:  314-363-1040

Considerations when Planning an aHUS Fundraiser

All fundraisers should be done in good taste. They are representative of the Foundation, and in a broader sense, our collaborative partners.

 Do not co-mingle fundraiser beneficiaries without an expressed written approval from the Board. (i.e. fundraisers intended to benefit a specific family/patient vs. the foundation). This isn’t intended to imply that you aren't able to host a personal fundraiser, however, we ask that you consider the motto “we don’t help one child, we help all children”.

 Honor System. We understand that to promote a fundraiser, a personal financial investment may be required. At the end of the fundraiser, these funds would be returned to you. While it may prove difficult to monitor these finances, we trust that in the interest of the purpose, those individuals who host a fundraiser are honorable and trustworthy.

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 will gladly to provide documentation for employers

who offer 'matching gifts' to charitable organizations.   


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:   Ph:  314-363-1040

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



or receive an aHUS Pearl Bracelet as your gift for a $295. donation

*Guidelines are subject to updates, please contact Crystal Ferreira at, if you have any questions or concerns.


To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

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

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


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.

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 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

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



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