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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.
The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012
Contact info for Deborah Lewis, E: firstname.lastname@example.org 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.
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