"Some day this disease will be considered a treatable nuisance"
-- Dr. Vescio from Cedars Sinai

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Support Group Tips

Medical Links and Clinical Trials

Clinical Trial for Primary (AL) Amyloidosis - Click here
Clinical Trial for Familial Amyloidosis - Click here

Other Clinical Trials for Amyloidosis - Click Here

Boston University Amyloid Treatment & Research Program:
Website: http://www.bu.edu/amyloid/index.shtml
Boston Medical Center has nearly 5000 employees, 1400 physicians and an annual operating budget of approximately $2 billion.
More about BUMC Amyloid Clinical Centers
Amyloid Center Directions: MAP AND DIRECTIONS

ACCOMMODATIONS – PLACES TO STAY
http://www.bu.edu/amyloid/patients/hotels-maps/

Donations: https://www.bu.edu/amyloid/donate/form.html

Amyloid Donation Card: http://www.bu.edu/amyloid/donate/donationcard.pdf

FOR APPOINTMENTS AT AMYLOIDOSIS CLINIC IN BOSTON, call 617-638-4317

Mayo Clinic
Treatment options at Mayo:
http://www.mayoclinic.org/amyloidosis/treatment.html
Research at Mayo:
http://www.mayoclinic.org/amyloidosis/research.html
Mayo Clinic for Amyloidosis in Rochester:
http://www.mayoclinic.org/amyloidosis/rsttreatment.html
Dr. Morie Gertz
FOR APPOINTMENTS AT MINNESOTA, call 507-538-3270
Lodging Information and Map of Rochester MN
Biography
Mayo Clinic for Amyloidosis at Scottsdale, Arizona:
http://www.mayoclinic.org/amyloidosis/scttreatment.html
Dr. Rafael Fonseca
Biography
Mayo Clinic for Amyloidosis at Jacksonville:
http://www.mayoclinic.org/amyloidosis/jaxtreatment.html

Clinical Brief (pdf)

Donations:
Mayo address below with the checks made out to Hematologic Malignancies Fund-Amyloidosis and sent to:
Dr. Morie Gertz
C/o Mayo Clinic
200 SW First St
Rochester MN 55905

Indiana University
Dr. Merrill D. Benson,
Researcher in Familial Amyloidosis.
Biography
For reprints of Dr Benson's pamphlet on Familial Amyloidosis, please write to him at:
Dr. Merrill D. Benson,
Department of Medical and Molecular Genetics,
Indiana University School of Medicine,
975 West Walnut Street,
IB130, Indianapolis,
IN 46202-5251.

The Amyloid Research Group at the Indiana University School of Medicine: http://www.iupui.edu/~amyloid/team.htm

First recipient of the international Pasteur-Weizmann/Servier Prize:
http://www.servier.com/pro/html_news_home/pasteur_remise1.asp

The Mount Sinai School of Medicine, New York
Dr. Peter D. Gorevic,
Biography
Dr. Jonathan Bromberg
Biography

Human Immunology and Cancer Program
The University of Tennessee Graduate School of Medicine

Alan Solomon, MD
Program Director

American Cancer Society
Clinical Research Professor

Scientific Advisor to the International
Myeloma Foundation

Research Statement

The Human Immunology and Cancer Program (HICP) is a multifaceted basic and clinical scientific endeavor devoted to advancing understanding of the pathogenesis of primary (AL) amyloidosis and developing innovative diagnostic and therapeutic means; the ultimate goal is to eventually diminish or eradicate the calamitous effects of this disease. Our research efforts are directed towards the precise identification and characterization, through immunological, biochemical, and molecular biological techniques, of the protein components that are largely responsible for the devastating manifestations of this disorder. Based on this knowledge, we also are formulating innovative diagnostic and therapeutic approaches for patients with AL amyloidosis. Through use of both in vitro and in vivo experimental models, various chemical and biological substances are being tested to determine their capacity to break down amyloid deposits. Because certain maladies, such as Alzheimer's disease, also are caused by the abnormal deposition of other types of proteins, we anticipate that the results of our work will be beneficial to individuals with these conditions, as well.

Current Clinical Trials

We currently are recruiting patients for the following clinical trials: Radioimmunoimaging of AL Amyloidosis: The ability to visualize a disease process by CT, PET, or MRI scans provides physicians with an important diagnostic tool, as well as a means to tell if a patient is responding to treatment. In the case of AL (primary) amyloidosis, these techniques are not particularly informative or "amyloid-specific." Given the need to document the presence and amount of amyloid in major organs, such as the heart, liver, spleen, and kidneys, we are utilizing another strategy; namely, one that is based on our experimental data that have shown that an antibody developed in my laboratory, when labeled with a particular isotope of iodine, can interact with the amyloid, causing it to "light up" when scanned by PET/CT. These findings have led us to initiate an FDA-sponsored trial designed to determine how effective this antibody will be as an amyloid imaging agent. We now are recruiting patients for the study which involves an infusion of the radiolabeled antibody over 10-20 minutes, followed in 48 hours by a 40-minute PET/CT scan which is repeated three days later. To be eligible, individuals must have a confirmed diagnosis of AL amyloidosis and not be on kidney dialysis. There is no charge to participate, except for routine laboratory and other tests, which typically are covered by insurance. For those who live out of town, limited funds are available to cover the cost of transportation, food, and housing.

Human Immune Globulin in Treating Patients with Primary Amyloidosis that is Causing Heart Dysfunction: Patients with AL amyloidosis who have predominant heart involvement unfortunately have a poor prognosis. In this regard, we have found that human immune globulin (an FDA-approved protein product) contains naturally occurring anti-amyloid antibodies and we have shown experimentally that they are capable of eliminating amyloid deposits. Based on these findings, we are conducting a drug company-sponsored trial to determine if human immune globulin indeed can be of benefit to those with heart-related AL amyloidosis. Eligible participants will be given intravenous infusions of this protein (this takes approximately 2 hours) in my clinic once a week for three months and then at two-week intervals during the next 9 months. Although there is no cost for the human immunoglobulin product, patients are responsible for routine clinic and laboratory charges, which typically are covered by insurance.

For more information, see more of Dr. Solomon's BIO and Bibliography and Curriculum Vitae (MS Word Documents). See also a feature story (pdf)

Other Clinical Trials for Amyloidosis - Click Here



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