September 2014 guests were Drs. John Berk, Janice Wiesman, Vaishali Sanchorawala
September 21, 2013 -We had a wonderful annual meeting today…thanks to our patients and caregivers…visiting doctors….and the entire BU staff along with the Nassau Wings MC. ….more about that later…
We had newbies and veterans to give our newbies hope…Ken who is 12 years plus since his SCT and John Ross almost 7 (treated at Mayo) and Adel 5 plus and David (2 heart TX and 8 yrs. out from his SCT (his first heart got a heart attack so he got a second right away - all in the first year!). Then he got the stem cell transplant…and looks oh so wonderful…we had one AA family, one Senile (Wild Type TTR) and two localized airway…we discussed the possible “morphing” of one of our localized airway into systemic and Dr.Skinner explained that if that had happened (and the patients was not a victim of double bad luck the other way of getting two versions of amyloid) it would be considered what they call …spelled- out- N of One…meaning that it was not a significant number to be counted ….(except to that patient of course)…just as our Tracy and her dad both having AL was N of One…again significant to the patient(s) but not something to be counted in the medical statistic world… being aware is enough…relief for all of our localized am sure…
Dr. Havasi – BU nephrologist and Dr. Wiesman – neurologist helped field the Q and A and we were able to hear from most of the group. We have been keeping Dr. Wiesman busy doing other meetings for us and now that we have met Dr. Havasi…..well..:-)
Dr. Skinner visited us along with the Nassau Wings MC www.popsrun.org and after lunch we walked over to the reception area for a formal (well Dr. Seldin said a few kind words that I’m sure he enjoyed saying. And wouldn’t mind doing weekly) ceremony and unveiled the plaque (over $56,000 donated over the years) and snacks, a video and lab tour was given to all…along with a view through the microscope of amyloid -Congo red turning the pink to green…awesome…Dr. H. Cui was patient with all who looked and explained all over and over again) and said each slide takes 3 hours to properly analyze!….
Dr. Connors also was great and answered everyone’s questions….as did all the docs and all left around 4pm….several were missed but we hope to see you at a future meeting…
Our guests for September 21, 2012 was Dr. David Seldin and Dr. John Berk as well as several other team members
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.
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
Dx 12/2000 AL Amyloidosis
Liver, Spleen, Kidneys
Rx HDCT/SCT, 2/01 & 10/01