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Support Group Tips

Massachusetts - Boston

If you would like to talk, please call the ASG at 866-404-7539 toll free in the USA (leave a message if no one is there and you will be called back). The non toll free number is 630-350-7539.

AMYLOIDOSIS SUPPORT GROUP MEETING
Contact Person: Muriel muriel@finkelsupply.com or mangelamy@yahoo.com

Date: EVERY TUESDAY WHERE THERE IS NOT A MONDAY HOLIDAY AT THE MOAKLEY BUILDING WITH A MAJOR MEETING IN SEPTEMBER (September 8, 2012)
Time: 10:00 AM – 2 PM – BRUNCH SERVED
Location: Weekly at the Moakley Bldg.

ASG MEETING - Boston University Medical Center
88 East Newton Street
(Newton Pavilion)
Boston MA

ROOM CHANGE! Meeting moved to rooms 2710 C AND D. On the second floor close to Atrium, Cafeteria and Bathrooms Nearby
Click here for directions

Comments: Guest –Dr. David Seldin (September 2012)
Notes on previous meetings: Our guests for our 2011 annual meeting were Dr. Martha Skinner and Dr. John Berk .....It was so great to see Ken and Clara(AL), Melodie and Evelyn (localized ),Mary-Ellen (AA-Primary unknown) and so many others that we had over 30!


Our Guest September 2010 was Dr. John Berk .....It was so great to see Ken and Clara(AL), Paulette and Jim (localized and MGUS),Mary-Ellen (AA-Primary unknown) and Tom, Pat (AL), Myrna and John Ross (AL,), Bonnie and Adel (AL), Megan (Tuesday facilitator), Tony (AL), Jen and Steve (AL), Marilyn and Bob (Age Related), Dianne, Diana and Donna, who lost loved ones along with Steve and me who also lost a loved one years ago, (we were at the first meeting on 9/11/2004) – now it’s about survival...what a wonderful difference....and Jon Carpenter from BU, and our special guest Dr. John Berk.....


9/12/09 Our guests were Dr. David Seldin and Dr. Jeff Zonder...we had over 20 and it was a great mix of veterans, newbies and all types of amyloidosis...our doctors helped make this one of our best Boston meetings ever.


9-20-08: Our Guest, Dr. Janice Wiesman – NEUROLOGIST answered questions pertaining to Peripheral Neuropathy or other related questions….she gave us a great hand out an we are making sure we spread the word…it was a great meeting……..


Dr. Rob Klett , Boston’s newest and brightest was our guest for the April meeting. 13 people were all ears and the give and take was wonderful. We learned so much and had fun while doing so.


Guest Speaker for Oct 17th was Director of the Amyloid Program Dr. David Seldin Well how do we top this…another Patient’s Day perhaps? 27 people plus special guests from several states…….Highlights were many…..hearing about Jenifer and Steve’s appearance to come on AMAZING MEDICAL MARVELS , meeting Dylan of the May Fund…..and Ray …both he and Dylan’s family had Dr. Skinner as a doctor for their familial treatments….There was a wonderful presentation by the Jamieson Family of the funds donated from their fundraiser……Boston, ASG and ASN will get to fill some coffers and the money will go to wonderful places indeed…Dr. Seldin’s laid-back demeanor, almost shy, is so appealing and comforting….Dr. Skinner popped in as did Dr. Berk and John Carpenter……Our next Boston Amyloidosis Support Meeting is April 12…hope to see you there…and don’t forget Pop’s Run Fundraiser on Long Island June 29th.


We wish Ken and Clara luck as they take their new step to live in Florida. They were married in November and now will enjoy life together in Florida proving there is life after stem cell transplant and in this case two of them:=)
5/'07 - Dr. Seldin was a wonderful guest and appreciated by all. Boston is lucky indeed to have this great team of which Dr. Seldin is such an important member.
We had a wonderful meeting in Boston today. Dr Skinner was terrific in answering our questions and sharing with us her perspective on the courses of treatment available to us for our respective Amy issues.

She is just magical in the way she simplifies her discussions so that all can follow the discussion. We are so blessed to have people like her working on our behalf. For those of you who missed our meeting, you missed a good one. Best regards, Ken

Facilitator: Amyloidosis Support Group

Boston/New England
Dx 12/2000 AL Amyloidosis
Liver, Spleen, Kidneys
Rx HDCT/SCT, 2/01 & 10/01
CR ----------------------------------------------



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