OUR 2010 MEETING FEATURED THE FOLLOWING GUESTS:
Dr. Martha Skinner – Boston University’s magic bullet for all types of amyloidosis
Dr. John Berk – Boston University’s leading doctor for familial amyloidosis
Dr. Morie Gertz – Mayo Clinic’s chief of Medicine and superior knowledge of all of the amyloidoses
Dr. Steven Zeldenrust – Hematologist and expert on familial amyloidosis too
Dr. Merrill D. Benson – broke out most of the variants of the inherited form of amyloidosis
Dr. Peter Dyck – he “wrote the book” on peripheral neuropathy
Clinical Trial Investigators
Dr. Peter Dyck and Dr. John Berk
HELD ON 10-31/11-1-2009 IN THE CHICAGO AREA
Familial Amyloidosis
Yesterday, today, and tomorrow
by Dr. Skinner (PDF Document)
Transplantation for Amyloidosis - 18 Years Later
by Dr. Steven Zeldenrust
Presentation by Dr. Marcia Waddington – Cruz
Thank You flyer for all who spoke and attended
DAY 1 OVERVIEW
The first familial only meeting for patients as been a great success thus far. It started with a meet and greet Friday night at the local Marriot Courtyard in Wood Dale....
There were at least 50 people there and all enjoyed the 5-9 pm nibbles and sharing and eating and talking and eating.......
After a hardy breakfast all met at Finkel Supply along with those that drove in, flew in late, or were local.....there were over 90 people..!!!!! Every doctor said they had never seen so many familial in one room before....and those wonderful doctors Dr. Martha Skinner, Dr. Morie Gertz, Dr. Steven Zeldenrust, Dr. John Berk, Dr. Merrill Benson, and Dr. Jared Gollob, Dr. Walter Singleton, Dr. Donna Grogan and Dr. Marcia Waddington-Cruz (the latter four part of on going trials) were informative, educational, helpful, supportive and in some cases even humorous. All returned to the hotel for a wonderful dinner and come back tomorrow for a Q and A session followed by lunch and then...home....
It was great to see how the inclement weather in various states including our own didn’t keep anyone away.....they came from the entire Pacific Coast.....Northeast, Middle Atlantic ......South, West and the Midwest......and even snowed in Denver....relatives meeting for the first time.....or reconnecting......and maybe even a new variant or two discovered....
Will fill all in on the Q and A should anything new and exciting pop up.....
DAY 2 OVERVIEW
We started bright and early (for us on a Sunday 8:30) after a hardy breakfast at the hotel with a wonderful open forum Q and A.
The Doctors on the Panel were Drs. Benson, Berk, Zeldenrust and Drs. Grogan and Dr. Waddington-Cruz. The Moderator was
Dr. Gertz and I was part of the audience of patients, family members and care givers.....Dr. Grogan had to leave to get back but
Dr. Waddington – Cruz of Brazil stayed on until the end.
The group wrote down questions and Dr. Gertz fielded them and assigned them to each doctor for answers and discussion...
..It was quite lively, educational, occasionally humorous and always informative and right on. I would like to ask permission of all of the
doctors to pass on the slides to all of the patients at the meeting.....hopefully we will get it.....
For a doctor to give up one day for our meetings is most appreciated....to give up two is so far above and beyond and showed
us all how necessary it was for the familial amyloidosis patients of the USA...to have their own meeting...to understand their own disease.
..to learn to cope, and find out what is being done to help them and future generations.....
I am having the Q and A gone over by the doctors for their o.k. and then will put some of them out there for all....we don’t want to break
any privacy issue....and we do thank the doctors again for their help, support, education, research, treatment, and anything else
I may have left out.....oh forgot ...we finished up with a great lunch too, remember....FOOD IS SUPPORT....
and thank you to those members of the Chicago Area Support Group for helping out as well as Finkel Supply employees and dear friends......
All have been taken to the airport except for the night flights and those staying on a bit for site seeing....
The Marriot Courtyard gave all late check out and was so helpful as were out caterer whose staff VOLUNTEERED to stay on and serve....
.and wonderful Brook Furniture Rental for loaning us the chairs at NO CHARGE.....
This meeting was all about giving........and it truly is a wonderful thing to be able to do.........
Dr. John Berk of Boston – our doctor of the month for December
Dr. Martha Skinner of Boston – and Muriel of the ASG
Dr. Merrill D. Benson of Indiana University
