The Atypical HUS Foundation

Mission Statement

You are currently on a NING Social Networking Platform, although The Atypical HUS Foundation also has a website.

Click HERE to view the official website of

The Atypical HUS Foundation 

 Welcome to this Interactive Site

 A Networking Site to Provide Information and Support

to aHUS Patients, Caregivers and Families

 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 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 knowlege as we strive to improve the lives of patients and families dealing with aHUS.

 
    
   Interactive Site's Mission Statement
Connecting People, Information, Resources, and Opportunites
  
The Atypical HUS Foundation is a 501c3 nonprofit organization dedicated to helping children and families who have been affected by this disease.  The Foundation's website is at www.atypicalhus.net while this associated interactive site is www.atypicalhus.org .
 
The 3 primary goals of The Atypical HUS Foundation are:
1) To furnish information to aHUS patients, caregivers, and families about this rare but devastating disease.
2) To provide support by establishing a network throughout the world in which parents can communicate with one another, exchanging opinions and experiences.
3) To expand education and outreach to patients, families, and medical personnel, as we strive to connect all those interested in aHUS issues and research in meaningful dialogue and collaborative opportunities.  
 
                                              
Mailing Address:

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 

 

Regretfully, many of our aHUS patients and our families are burdened by the high costs incurred by this rare disease diagnosis and its broad financial impact.  Our Foundation does not advertise personal fundraising endeavors nor do we have the funding to support financial assistance to aHUS patients, their caregivers, or their family. 

In keeping with our mission statement, we refer questions regarding financial support to the Patient Assistance Programs noted on our Rare Disease Resource List.

  
                                
 
 
 
______________________________________________________________________________ 
Message from the Founders of the ATYPICAL HUS FOUNDATION

  

The Atypical HUS Foundation is a 501c3 organization designed to serve three major purposes.  The primary purpose of the organization is raising monies in order to fund medical research.  The medical research that will be funded will be those studies that are attempting to find better treatments or a cure for this rare disease that affects mostly children.  Our foundation does not intend to do any medical research itself.  Instead, it will seek out those organizations that are searching are qualified to do research on this type of disease.  Included in this definition of “better treatments” is the ability to better diagnose the condition.  Therefore, when financially possible, The Atypical HUS Foundation will attempt to provide direction to outside resources that may provide some financial assistance for genetic testing to the uninsured. 

 

A secondary purpose of the organization will be on the development of information and support materials for parents of children who are suffering from this disease.  The information includes a website, printed materials about the disease, internet forums and well as occasional press release about the disease.

 

Finally, we will increase public awareness by educating our medical community, especially pediatric nephrologists and hematologists worldwide, which will ultimately help obtain public funding for the disease. 

 

We are a national organization with a dedicated group of volunteers who work tirelessly to promote the Foundation’s goals and objectives.  While the disease is not common, our group is a formidable group with a very dedicated core group of volunteers who have already made an impact, as evidenced by the funding of approximately $260,000 in research, which has been administered via several grants over the past five+ years.  Our foundation prides itself because it is comprised entirely of volunteers, a small but dedicated group of parents.  Our primary group is comprised of parents of the children afflicted with this disease.  This group is from a widely dispersed geographic area, with representation from the Western, Midwestern, Southern and Eastern parts of the country.  Approximately one third of this group is extremely active. 

 

Besides sponsoring grants, we have also made a trip to Bethesda, MD, home of the National Institute of Health, to find out the process for obtaining United States Funding for this disease. We have been the sponsor of two scientific meetings in Europe dedicated specifically to Atypical HUS and TTP.   We hope to sponsor a scientific seminar in the United States, and also mobilize our parents to enroll in a more comprehensive Registry.  We currently have a graduate Student working on this specific disease through the University of Iowa.  We are sponsoring work at the University of Iowa on Factor H products.  Past porjects include collaboration with Taligen Therapeutics, a Pharmaceutical company, interested in working on Complement related diseases.  We have gathered information on patient and population data and have helped biopharmaceuticals identify key market characteristics. Finally, we continue plans to work with Alexion Corporation and its latest drug, Soliris. 

  

I hope this gives you a better insight into our group, and we welcome any questions.

 

 

Bill and Cheryl Biermann 

Founders

636-942-4425

email: bbiermann@premier-ks.com

www.AtypicalHUS.net

 

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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