Why the foundation was created. In April of 2002 Don Brockman, one of the founders, was diagnosed with AL
Amyloidosis. It was discovered very quickly that the medical resources in the United States were few for this disease. Don's journey
took him from across the country finally finding a physician that was familiar with the disease and
treatment options, unfortunately these were limited.
The purpose of the Amyloidosis Foundation is meant to change that. Its goal is to raise money to support the
research necessary to develop more effective means of diagnosis and treatment and, ultimately to cure or prevent this disease.
AF attended the symposium in Woods Hole, MA November 5 – 9, 2006. The symposium brings together the leading researchers and clinicians from around the world, to share the most recent findings on treatments and diagnostics for all types of amyloidosis.
AF was able to support three young researchers with travel awards, allowing them to attend the symposium and present their research findings.
Some highlights of the Symposium include:
The National Amyloidosis Centre at the Royal Free in London is starting a clinical trial adding cyclosphosphamide (Cytoxin) to a regimen including Thalidomide and Dexamethasone for AL amyloidosis patients. Initial findings are promising.
Memorial Sloan-Kettering Cancer Center presented data that show the protein CD32B has been found on the outside of cells that cause systemic AL amyloidosis. CD32B then is a target for monoclonal antibody therapy for AL patients. Clinical trials are planned for the near future.
FoldRx Pharmaceuticals presented information on the drug FX1006A and its effect on being a stabilizer for selective TTR amyloidosis, with clinical trials to start soon.
An overwhelming theme emerged regarding accurate diagnosis of the exact type of the disease being so important to select the proper treatment course. It is evident that improved practical ways to type amyloid from tissue biopsies -- using nanotechnology or protein arrays are needed. It was also strongly expressed that the various specialty centers around the world need to work together and share information for the betterment of the patients.
We have started a drive to assemble a second quild, and maybe even a third. If you would like to participate by providing a block in memory or honor of someone you know and care for, or perhaps someone lost to this disease, please email us and we will send you the directions and information. We hope to start assembling the second quilt in early 2008. If you have any questions please give us a call - 1-877-AMYLOID
Diane Rosenau Memorial Amyloidosis Research Ride - On Saturday, August 25th, 2007, in Lincoln, Nebraska a group of people organized this ride in memory of Diane, who lost her battle with amyloidosis this year. The ride included Hot Rods, Street Rods, Motorcycles and other modes of transport. This enthusiastic and dedicated group raised over $10,000 for research.
Goofy Challenge - There is a young lady in Florida who plans on running both in a half marathon and a full marathon at Disney World called the Goofy Challenge January 12th & 13th, 2008. She is running in memory of a dear friend of hers who just recently lost his battle with Amyloidosis. If you would like more information about her efforts to raise money for research please contact us - 1-877-AMYLOID
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