Mission Statement
Our Interactive Website
A Networking Site to Provide Information and Support
to aHUS Patients and Families
The Foundation for Children with Atypical HUS 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.
1) To furnish information to aHUS patients and parents 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.
The Foundation for Children with Atypical HUS 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. The 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 Foundation will attempt to provide genetic testing at a reduced rate or even free of charge to those 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 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. We are currently working on a project 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 Talligen identify key market characteristics. Finally, we have future 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
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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