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Were you diagnosed with Cerebral Amyloid Angiopathy (CAA)?
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Amyloidosis Support Groups

We are a phone call or email away!
24/7 TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.org

Survivor Stories

To submit your Survivor Story, or update your existing story, please email muriel@finkelsupply.com

There are many long term survivors of Amyloidosis - here are some of their stories:
Name Type of Amyloidosis Date of Diagnosis Treatment
Alt For. AL 2014 Chemo
Dan Baker AL 2004 Chemo, SCT, Dex, Thalidomide Complete Remission.
John Ball AL 2010 Chemo and ASCT
Tim Bass AL 2002 HDC/SCT 2003 HDC/SCT 2007
Javier Beltran ATTR 2007 DOMINO LIVER TRANSPLANT 11/2008
Jacqueline Birn MGUS &AL May 2003
AL Oct 2006
ASCT 1/5/2007
excellent response: partial remission
Lorraine Brown AL March 2008 Valcade
Louis Catania AL with MM May 1994 Chemo then SCT/2nd SCT Summer of 2016
Lynette Dager AL Aug 2004 Transplant, SCT & Chemo
A (anon) AL 2008 SCT
Adel Foz AL 2007 SCT/2008/BUMC/Complete Respnse
Fred (Anonymous) AL @SMM 2003 SCT(over 70 yrs. old) Melpahlan, Revlimid, Velcade
Brenda Gregory AL with MM December 1997 Transplant, SCT & Chemo
Greta(anon) AL 2002 SCT
Amy Haas AA -TRAPS Spring – 2007 Dex/ Remission
Jay Helwig AL – Cardiac May 1994

Mel/Pred June 1994 -- SCT Aug 1994- BUMC

Alfred "Bart" Howe AL with MM MM-Dec 2001
AL -Dec 2003

Chemo with Revlimid

Fred Jackson AL with MM Feb 2005 SCT
John AL 2012 Chemo
Steve Keller AL 2004 SCT & Chemo
Penny Kubik AL 2003 SCT
E.L.K. Hagerstown, Md ATTR 6/26/2002 not yet active (AMY is dormant)
Paul Langlois AL 2010 SCT-Heart TX – Velcade, CYBOR-D, Rev, Vel, Dex Carfilzomib , NEOD001 trial/Daratumumab
Vince Liguore AL 2009 SCT – Chemo – Heart TX
Walt McGuire AL June 2006 Rev/Dex –SCT- Organ TX’s
MDL AL with MM Dec 2002 Dex prior to SCT
Claire Montour Familial apoA1 1999 Triple Organ Transplant Heart, Liver, Kidney – May 20, 2008-Mayo/MN
Jack Moore AL June 2005 SCT
Joni Pearl AA    
Kay Rowley AL FEB 2002 Chemo/Complete Remission
Sandi Sadler Familial ATTR Oct 2003 Liver Transplant
Dan Sansbury AL March 2010 Rev/Dex – 5 cycles, Velcade-2 cycles- ASCT – 10/2010
Sonya Scarff AL Apr 2004 Chemo
Kathy Spaulding AL July 2007 Melphalan and SCT
Sam T. (PA, USA) AL-Pulmonary 2/6/03 Chemo
IRVIN VANDER LEEST AL November 2006 Chemo
Kathy Wilson AL and MM 2003 Chemo off and on..SCT 2013 Complete Response/Dialysis 2016/


AL = Primary Amyloidosis AA = Secondary Amyloidosis
ATTR = Hereditary Type Amyloidosis
MM = Multiple Myeloma WM = Waldenstrom's Macroglobulinemia

To tell others about your own survivor story, please fill out the form below.
Your email address will only be displayed on the page if you specifically request it.
Your name can also be changed if you wish - just put the request in your story at the bottom, with a suggested alternative. Photos are fine - just email muriel@amyloidosissupport.com
Any general queries - ask Muriel (muriel@amyloidosissupport.com)
or Elinda (drlado@VERIZON.NET)

Support Groups


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We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.

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