Our Feb 9th, 2008 guest was Dr. Jeffrey Zonder of Karmanos Cancer Center Detroit Michigan
Our guest, Saturday November 3, 2007 was Dr. Suzanne Hayman of the Mayo Clinic in Rochester Minnesota
http://www.mayoclinic.org/hematology-rst/11254050.html
And Pilar McKinney of the LLS www.lls.org
MAYO DAZE 1 -There we were 27 patients and care givers in the Siebens Building (has a green house on the top where many of the plants etc that beautify the Mayo grounds are grown and nurtured), having a wonderful meeting with Dr. Buadi, new to us but not Mayo. All had an opportunity to share and Q and A while eating breakfast and lunch. We had four newbie’s and we all contributed to alleviate anxiety and fear. It was great to have one of our kidney transplants (recent) there with her donator brother and both looked so great. They had been to our first meeting in fall of 2004.
Then Dr. Gertz came off rounds and came by to explain in the most wonderful terminology Kidney and Cardiac Amyloidosis……alleviating even more apprehension and helping to empower the newbie’s as well as the others. The bonus was being treated to a guided tour by Dr. Gertz through the main buildings (Gonda, Plummer, Siebens etc.) and the artwork ranging from Andy Warhol to Auguste Rodin’s 7 foot statue “Jean D’Aire…and Miro to Ellsworth Kelly to Calder and …..well you get the drift…..
The tour of the laboratory (anyone who went to Patient’s Day in Boston would have a bit of déjà vu)….was wonderful and Laura our tour guide (Marina was in a triathlon) was wonderful…..All were to give up their Saturday for us to learn and share and have a wonderful experience…..
Steve and I joined a couple from Arizona for dinner at “The Hubbell House Restaurant” …circa 1854 in historic Mantorville….Population about 1000…but quaint and charming….tomorrow we all have brunch with Dr. Hayman back at the Siebens Building…..definitely a wonderful weekend……and appreciated by all…..…
MAYO DAZE 2 - Dr. Suzanne Hayman was so wonderful to give up her Sunday to get down and dirty with us for our wonderful brunch. Our group bonded beautifully and we did think the requirement of reading a chapter a day of the Wheel of Time Series by Robert Jordan was a bit much; but realize that if Conan the Barbarian and Wheel of Time was her reading material and she was so brilliant and down to earth and amyloidosis savvy doctor, then her suggestions should be followed. Our brunch extended into lunch and we had an educational, bonding, sharing supportive, FUN time……THANK YOU EVERYONE FOR BEING SO WILLING TO SHARE…EVERY ATTENDEE AND DOCTOR GAVE OVER 100 PER CENT.
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Our guest speaker on 3/24 was Dr.Kevin Barton Hematologist/Oncologist from Loyola Hospital, Maywood Il.
It was a wonderful experience for the 25 guests and we look forward to seeing Dr. Barton again.
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We had a wonderful Support Meeting today (04/22) with our Special Guest Dr. M.D. Benson of Indiana University. He took the time to talk to the entire group of over 30 people at the meeting and answered all questions, with a wonderful dry wit and humor. Dr. Maria Picken, Pathologist at Loyola University Hospital, dropped in to say hello for a bit (she lives a few minutes away and has an open invitation). We had Familial, AL's and AA represented. All left exhausted, educated, excited, well fed and looking forward to the next meeting.
Our guest speaker is to be announced. We will have attendees from 4 states or more. Please let us know if you have any special needs or requirements, or help in making the meeting.
muriel@finkelsupply.com toll free 866-404-7539 leave message
Be sure and use map, and address from previous meeting and if you wish to spend the night, let me know, as the Wyndham Gardens in Wood Dale has special rates of about $59.00 a night........ask for David Mann and mention Amyloidosis......call for directions, our office number is 847-350-7540.
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We had people from several states representing several types of Amyloidosis come to today's meeting to hear Dr. Morie Gertz speak and to share and give support. Again, "He blew them away". Dr. Gertz is definitely a nominee for the Golden Colander award. We also had the privilege of meeting his lovely wife, Marcia, and it was great for all attending, pre SCT, post SCT, post Transplant, and other variations there of.
Our next meeting will be Oct. or Nov. and we all look forward to seeing each other again. This was our third meeting, and a definite bond was formed with the new and the veterans. For those that could not make it, please e-mail me for a condensed version. Muriel Finkel
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The Chicago meeting was a big success. We had 20 wonderful people from the Chicago Metro Area, including Wisconsin and Michigan. We had a 50/50 split between Primary AL and Familial. We had a brother and sister that had been at the Detroit meeting come too. It was interesting and informative for all. We agreed to have our meetings quarterly.
We all agreed that awareness and passing out posters and brochures to our doctor's offices would be a great project. We also want to have a sponsor at as many local events as possible. It is too late for the Chicago Marathon; but, we have some other ideas. We shared doctors, treatments, and bonded beautifully. We all missed those that could not make it; and hope to see them next time around. We will keep you informed.
For now we will leave it as the next meeting taking place in February, at the Corporate Office of Finkel Supply in Itasca IL. We have a conference room for at least 30, and a kitchen for catering. We are less than a mile from some major hotels, and will offer our own limo service, should it be needed. We will have Dennis post up-dates on www.amyloidosis.org under family support, as we have new information.
Thank you, Muriel Finkel, 7th Nov 2004
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Hello All..... I just arrived home from the Chicago support meeting.....
What a meeting! We ate, we talked, we ate, we talked..... we supported
each other, hugged, told our stories, ate some more, divided into groups and shared more..... Our guest speakers, Drs. Singhal and Mehta were so relaxed, both very bright intelligent young doctors, talked with us as we fielded them questions for over 2 hours.... Our thanks to them and how lucky we are that they are at Northwestern....... Of course our biggest thanks to Muriel and Steve for having the meeting at Finkel Supply in their new board room or conference room which ever Muriel calls it?.... We love them dearly and they are SUPPORT!!!! Can't wait till June.....
Sue Anne Smith, 14th Mar 2005
