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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.com


Chicago

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).

AMYLOIDOSIS SUPPORT GROUP MEETING
Contact Person: Muriel info@amyloidosissupport.com
866-404-7539 Toll Free

PLEASE INQUIRE ABOUT ACCOMMODATIONS AND TRANSPORTATION-SHOULD IT BE NECESSARY

Date: March 25, 2017
Time: 8:30am to 2pm (approx.)
Location: MARRIOTT COURTYARD WOOD DALE/ITASCA
900 N Wood Dale Rd,
Wood Dale, IL 60191
Between E Thorndale Ave/Thorndale Ave and Sivert Dr
www.marriott.com/chiwd
Comments: GUEST- Drs. Rafat Abonour(IUPUI) and Cara Rosenbaum(U of C) and a rep from Prothena (NEOD)
Notes on previous meetings: October 22, 2016 Saturday our guest was Dr. Jeff Zonder from Karmanos and Dr. Cara Rosenbaum from U of C


Saturday June 25TH, our guest was Morie Gertz MD – Mayo Clinic


Saturday July 11th our guest was Shaji Kumar MD– Mayo/Rochester– Mayo/Rochester


Saturday February 28, 2015 our guests were Stephen Russell – Mayo /Clinic , Rafat Abonout – IU and Dr. Hari from MCW

We met at the Marriott Courtyard in Wood Dale/Itasca because of construction at Finkel Supply (redecorating) and construction outside (building the Elgin-O’Hare Expressway). Because our group grew to 45 the room was perfect! Sharon and Amy at the hotel are so helpful and have been committed to work with our groups in many ways for several years. They did not charge us a fee for the use of the room and let us bring in our own food so we did not have to spend more on catering !

This was the first time we had Dr. Abanour from Indiana University and Dr. Hari from MCW at our meeting. I hope we got them to commit to coming to the next meeting on July 11th as well.

Not only was this Dr. Russell’s first visit to our Chicago meeting (his prior appearance was in K.C) , but he had been on HBO’s program about Killing Cancer the night before (it can be seen on Demand now). The program was a part of their VICE series.

The rating sheets told us that you really enjoyed everything from the doctors, and clinical trial updates including Dr. Russell’s information on killing myeloma with measles vaccine (maybe someday amyloidosis) and his clinical trials at Mayo for that. You also enjoyed the Binding site Free Light Chain presentation and all the input from everyone.


September 2014 guest was Craig Reeder Mayo/Phoenix


June 28, 2014 our guest was Dr. Angela Dispenzieri Mayo/Rochester along with Dr. Kevin Barton of Loyola


Saturday, March 15, 2014 Our guests were Dr. Francis Buadi - Mayo/Rochester and Dr Cara Rosenbaum from Univ. of Chicago


Saturday September 28, 2013 our guests were Dr. Arleigh McCurdy of Mayo/Rochester and Dr Cara Rosenbaum from Univ. of Chicago


Saturday June 8, 2013 our guests were Dr. Martha Grogan of Mayo/Rochester and Dr. Cara Rosenbaum of U of C


Saturday March 2, 2013 our guest wasMartha Skinner MD
http://www.amyloidosissupport.com/dr_skinner.html
http://www.amyloidosissupport.com/about.html#skinner


SAT OCT 27 2012 our guest was Jeffrey Zonder MD – Karmanos Detroit


Saturday June 30, 2012 our guests were Dr. Martha Lacy – Mayo Rochester MN and Dr. Cara Rosenbaum Uof C


Saturday Saturday March 24, 2012 our guest was Dr. Martha Grogan Mayo./Rochester Amyloid Cardiologist


Saturday October 15, 2011 our guest was Dr. Jeff Zonder – Karmanos//Detroit—always a favorite guest at so many of our meetings


Saturday June 25, 2011 our Guest was Dr. Angela Dispenzieri from Mayo/Rochester


March 2011 guest David Dingli MD PhD- Mayo/MN and Belinda Ng MD – Amyloidosis Cardiologist


October 23, 2010 our guest was Dr. Jeff Zonder – Karmanos/Detroit- over 35 people received education, support and had a great 6th anniversary meeting..


Our guests JUNE 26, 2010 Dr. Kevin Barton /Loyola and Dr. Maria Picken/Loyola and Dr. Robert Kyle – Mayo/Rochester made for the best meeting yet with 40 patients and caregivers.....


Our guest in February was Dr. Martha Lacy – Mayo/Rochester – Over 40 elated guests were educated supported and well fed


Our guest in November Dr. Suzanne Hayman – Mayo/Rochester-- Dr. Hayman has proven to be one of our more popular guest doctors no matter where the meeting. Her refreshing style of honesty and humor along with her natural “down to earth” personality enhances her superior knowledge of amyloidosis and makes it fun for all to learn and receive and give support.


Our Guest – Dr. From Loyola Chicago, Dr. David Vesole was wonderful and we look forward to his return.


Our November 8th, 2008 guest was Dr. Martha Lacy from Mayo


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.

******************************************************

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.

******************************************************

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.

Thank you, Muriel Finkel, 7th Nov 2004

***************************************************

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



Support Groups

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**TTR & Familial**

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