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

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**TTR & Familial**

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Utah


UK SUPPORT GROUP WEB SITE


International Amyloidosis Centers
• Center for the Study of Familial Amyloidosis
(Rio de Janeiro, Brazil) –
• Center for the Study & Cure of Systemic Amyloidosis
(Pavia, Italy) –
• Germany
(Heidelberg) –
• Groningen Unit for Amyloidosis Research & Development
(The Netherlands) –
• National Centre for Amyloidosis
(London, U.K.) –
• Princess Alexandra Hospital
(Brisbane, Australia) –
• Spain
(Barcelona) –
• Westmead Hospital
(Sydney, Australia) –
• Kumamoto University Hospital
(Kumamoto, Japan) –
• Princess Margaret Cancer Centre
(Toronto, Canada) –


Support Group Tips

Medical Links and Clinical Trials

QUICK REFERENCE INFO ON AMY:

Alnylam http://www.alnylam.com/
Celgene http://www.celgene.com/
Isis http://www.isispharm.com/index.htm
Millennium http://www.millennium.com/
Onyx http://www.onyx.com/
Pfizer http://www.pfizer.com/
Prothena http://www.prothena.com/
See www.clinicaltrials.govfor up to date trials by typing in amyloidosis

Amyloidosis Center at Boston University School of Medicine and Boston Medical Center– Boston, MA
http://www.bu.edu/amyloid/
http://www.bu.edu/amyloid/contact-us/

Mayo Clinic – Rochester, MN
http://www.mayoclinic.org/amyloidosis/
http://www.mayoclinic.com/health/amyloidosis/DS00431 http://www.mayoclinic.org/patientinfo/appointments.html
MAYO AMYLOID SUPPORT PDF

Cedars-Sinai Medical Center Multiple Myeloma and Amyloidosis Program – Los Angeles, CA
http://www.cedars-sinai.edu/Bios---Physician/P-Z/Robert-A-Vescio-MD.aspx#.UhJpb9wo670

Indiana University School of Medicine The Amyloid Research Group at the - Indianapolis IN:-AA, Hereditary. AL
http://www.iupui.edu/~amyloid/team.htm

The Mount Sinai School of Medicine, New York City, NY- AA, Hereditary. AL
http://icahn.mssm.edu/search?q=amyloidosis&output=xml_no_dtd&client=my_frontend2&proxystylesheet=my_frontend2&sort=date%3AD%3AL%3Ad1&entqr=3&oe=UTF-8&ie=UTF-8&ud=1&site=prod-mssm&filter=0

Memorial Sloan-Kettering – New York City, NY-AL
http://www.mskcc.org/cancer-care/adult/rare-hematologic-disorders/amyloidosis

Karmanos- Detroit MI – AL (Primary)
http://www.karmanos.org/Physicians/Details.aspx?sid=1&physician=44

Oregon Health and Science – OHSU – Portland OR- AL
http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/amyloidosis.cfm

Seattle Cancer Care – Seattle WA-AL
http://www.seattlecca.org/diseases/blood-disorders-overview.cfm

Stanford - AL
http://stanfordhospital.org/cardiovascularhealth/amyloid/contact/appointment.html

Tufts Medical Center – Boston, MA -AL
https://www.tuftsmedicalcenter.org/OurServices/CancerCenter/B_ClinicalPrograms/HematologicMalignancies/

Brigham & Women’s Hospital Cardiac Amyloidosis Program – Boston, MA- Cardiac
http://www.brighamandwomens.org/departments_and_services/medicine/services/cvcenter/amyloidosis/default.aspx

Columbia Multidisciplinary Amyloidosis Program (NYC)
http://nyp.org/services/amyloidosis-program-overview.html

The Amyloidosis Clinic at UPenn Medicine (Philadelphia, PA)
http://www.pennmedicine.org/amyloidosis

Princess Margaret Hospital /University of Toronto.- Canada
http://www.theprincessmargaret.ca/en/HealthcareProfessionals/ProgramDepartments/LymphMyel/Pages/ClinicalPrograms.aspx

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

ACCOMMODATIONS – PLACES TO STAY
http://www.bu.edu/amyloid/evaluations/hotels-maps/ or download the PDF file of area hotels.

Donations: http://www.bu.edu/amyloid/donate/

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

Mayo Clinic (brochure) (map)
Treatment options at Mayo:
http://www.mayoclinic.org/amyloidosis/treatment.html
Research at Mayo:
http://www.mayoclinic.org/doctors-departments/departments-minnesota.html
Mayo Clinic for Amyloidosis in Rochester:
http://www.mayoclinic.org/amyloidosis/rsttreatment.html
Patient & Visitor Guide
Dr. Morie Gertz
FOR APPOINTMENTS AT MINNESOTA, call 507-538-3270
Insurance plans accepted by Mayo
Lodging Information and Map of Rochester MN
Biography
Mayo Clinic for Amyloidosis at Scottsdale, Arizona:
http://www.mayoclinic.org/doctors-departments/departments-arizona.html
Dr. Rafael Fonseca
Biography
Mayo Clinic for Amyloidosis at Jacksonville:
http://www.mayoclinic.org/hematology-oncology-jax/medprofs.html

Clinical Brief (pdf)

Mayo Clinic Amyloid Research Update - Spring 2011 (pdf)

Gabriel House of Care Mayo Florida

Donations:
Make a Donation to Mayo Clinic

Indiana University
Dr. Merrill D. Benson,
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. mdbenson@iupui.edu

The Amyloid Research Group at the Indiana University School of Medicine: http://research.iupui.edu/centers/db/details.php?id=211

First recipient of the international Pasteur-Weizmann/Servier Prize

The Mount Sinai School of Medicine, New York

Dr. Peter D. Gorevic,

CALIFORNIA: If you live in Southern California and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Cedars Sinai in L.A. Robert A. Vescio MD, Director, Multiple Myeloma and Amyloidosis Program; Hematologist/Oncologist Robert.Vescio@cshs.org.
If you live in Northern California and can not leave to get a second opinion Stanford as they now see about 50 new patients a year. Contacts: Michaela Liedtke mliedtke@stanford.edu Stanley Schrier, M.D. sschrier@stanford.edu
Location 300 Pasteur Drive Stanford, CA Phone (650) 725-6186 Fax (650) 725-1927

Also in San Francisco is Robert Klett MD. He completed residency training at BUMC and was a faculty member as well. He now brings his amyloidosis knowledge to http://www.pimgsf.com/campus_pacific.php Pacific Inpatient Medical Group. He can be called or emailed at roklett@gmail.com

FLORIDA: If you live in Southern Florida and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact
James E. Hoffman, M.D.
1475 NW 12th avenue, suite 3300 (D8-4) Miami, FL 33136
1192 E. Newport Center Drive, Suite 100 (D-9) Deerfield Beach, FL 33442
Office: (305)-243-4860
E-mail: j.hoffman4@med.miami.edu

MICHIGAN: If you live in the state of Michigan and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Dr. Jeff Zonder at Karmanos Cancer Center zonderj@karmanos.org

New York: If you live in the State of New York and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Mt. Sinai mentioned above either Dr. Gorevic or Dr. Keren Osman keren.osman@mtsinai.org and Sloan Kettering’s Doctor Heather Landau landauh@mskcc.org

OHIO: If you live in the state of Ohio and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Dr. Yvonne Efebera at OSU at Yvonne.Efebera@osumc.edu

OREGON: If you are in the Portland area and insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Dr. Chris Yasenchak would be the doctor to see at Compass OncologyTualatin Office T 503 692 2032 F 503 692 4450. You can email him at Chris.Yasenchak@USONCOLOGY.COM . If you wish someone affiliated with OHSU, Dr. Shernan Holton(Mayo trained).

WASHINGTON STATE: If insurance and other issues will not allow you to leave to get a second opinion or work up at Mayo www.mayoclinic.org or BU http://www.bu.edu/amyloid/ we suggest you contact Dr. Edward Libby of SCCA elibby@seattlecca.org 825 Eastlake Ave E, MS G3-200 Seattle WA 09109 206-288-7273 fax 206-288-1130

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)

CARDIAC AMYLOIDOSIS

http://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/amyloidosis/default.aspx

Boston University Clinical Trials
http://www.bumc.bu.edu/clinicaltrials/amyloidosis/

Mayo Clinic Clinical Trials
http://www.mayoclinic.org/amyloidosis/clintrials.html

For other clinical trials go to www.clinicaltrials.gov and type in your key words

KIACTA Study: Research Study Opportunity for AA Amyloidosis (pdf)

Clinical Trials not in USA: ALNYLAM PHASE 2-Hereditary TTR

University of Miami - James E. Hoffman M.D.

Amyloidosis Symposium 2012

Germany (Martinsried)



Amyloidosis Support Groups
AmyloidosisSupport.org
1-866-404-7539 TOLL FREE USA