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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


Michigan/Ohio-Detroit

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:

Paula Schmitt pschmitt_98@yahoo.com Muriel muriel@amyloidosissupport.org
Tel: 847-350-7540
866-404-7539 (Toll-Free)

Date: May 6, 2017 Saturday
Time: 9:00 - 3 pm Complimentary Breakfast and Lunch Served
Location: KARMANOS CANCER INSTITUTE – 4th floor conference room
4100 JOHN R STREET - Detroit, MI 48201 Phone: (313) 576-8730
9:00 start with light breakfast.
Comments: Guests: Dr. Jeff Zonder etal
Notes on previous meetings: Guests in September 2016 were Saulius Girnius , Cincinnatti and Grace Lin (Cardiologist) Mayo


May 7, 2016 Saturday Dr. Jack Valent, Cleveland Clinic and Dr. Jeffrey Zonder from Karmanos


Sept 2015 guest was Dr. Jeffrey Zonder


September 2014 guest was Dr. Martha Grogan – Mayo Clinic Amyloid Cardiologist-


March 29, 2014 Our Guest was Dr. Morie Gertz from Mayo/Rochester. One of our guests tweeted some of his presentation (PDF)


Saturday September 21, 2013- a patient’s perspective of the meeting:

Hi Everyone,

The meeting at Karmanos was so informative and inspirational.

Sue started the meeting with an introduction of how she became involved with the amyloidosis group with a heart wrenching story of her husband's fight with amyloidosis losing the battle so quickly, going from playing basketball daily and leading a very active life to congestive heart failure within 6 months. She led the meeting with courage and compassion for all of us.

Dr. Kyle from Mayo went over a detailed presentation of amyloidosis - explanation of the disease itself, listing of the types of amyloidosis, characteristics / symptoms of the disease, treatments and combinations of meds, prognosis for patients with the certain types and treatments, and much, much more. What a fountain of knowledge!!! His presentation was so interesting and easily understood. He answered all our questions as we went along. Did you know that Congo red staining actually identifies amyloidosis with an apple green color? We saw pictures of the amyloidosis fibrils that invade our bodies!!!

Carlos and I had to leave early due to a family event but we learned so much and met so many great people.

One young gentleman had familial amyloidosis and had both a heart and liver transplant - his story was amazing. If you looked at him, you would never know all that he has gone through. He looked healthy and strong and ready to go out and play some outdoor sport. As Dr. Kyle mentioned to me, and Sue also said at the meeting, looking at the attendees, you cannot, tell who is the patient and who is the caregiver.

One lady attended with her family who is rather new to amyloidosis and is under treatment (I believe Mayo Rochester recommended SCT) and they are considering a SCT but she is pretty sure that is not a choice she is ready for. Her family seemed to be taking careful notes on the choices available to her. Her husband was right on top of her diagnosis ... checking her numbers with the numbers being discussed by Dr. Kyle.

Another lady, who was also at the last Karmanos meeting, has been battling the disease with severe gastrointestinal issues with meds since 2005 (?) and seeing Dr. Zonder. She is now back to bowling and coping better with her restrictions.

A gentleman with his wife, who I had also seen at the last meeting, was under treatment with Dr. Zonder (working with Mayo) is trying to get his body ready for a SCT with chemo meds. A very concerning issue for him is that he has been passing out. Dr. Kyle and Dr. Valent gave him suggestions on how to stop these episodes. He and his lovely wife were very strong and seemed determined to beat his challenges and get a SCT.

A new couple was there - the husband who did not look like a patient was referred to Dr. Lacy, Mayo, by his doctor. He is currently on chemo meds (I can't remember the combo) and doing very well. He harvested his stem cells, just in case, for future use.

There was another couple, where the wife was the patient and she (just as most of us) had a terrible time getting diagnosed and treated properly. She had a horrendous experience with a feeding tube and infections. But she did have a SCT at Mayo and was in a complete response status. She still suffers from digestion problems having good days and bad. On good days, you can find her mowing the lawn. Amazing!!!

Another couple (new to the disease) who I have also spoken with both on the phone were listening intently and sharing their story. He was diagnosed during a regular check up (no symptoms) by spilling protein. He is very active, walking 4 mile stretches with his wife and a regular golfer. They are doing their research and considering their options by meeting and visiting doctors and facilities including Mayo, Karmanos and University of Michigan. They are really doing their homework and I am sure will make a very wise decision with choice of treatment.

I, of course, told my story of 1 1/2 years post SCT at Mayo,Rochester, Vel/Dex at U of Michigan for 2 cycles, going from wheelchair to walking as far as my legs will take me and meeting wonderful people on my journey (including one angel who flutters around all of us named Muriel). Currently in complete response status.

Sorry I did not take notes on all the names and I hope I remembered all the attendees who were there. Next time, I will be sure to record these facts. Hopefully, we will hear from participants themselves as to their take-aways from this great meeting. No words can substitute for actually being there - everyone takes away so much information that is unique to each experience with this disease.

Dr.Valent from Cleveland Clinic spoke on current trials and ????? Can anyone send in a short summary / highlights?

I was so excited to see Kristen Detweiler Short from University of Michigan (formerly Dr. Lacy's Physician's Asst) at the meeting. We did not get to hear her speak but I am sure she shared some great information. Would love to hear from someone at the meeting the topics she covered. I was seen and treated by her and Dr. Lebovic at U of Michigan.

As you can see, I took it all in - amazed and inspired by all of you who attended. I love having the opportunity to meet and hear all these stores. Knowledge is power - so thank you to all who shared their knowledge.


Saturday October 20, 2012 our Guest: Dr. Jeff Zonder shared updates from the symposium in the Netherlands and treatment updates


Saturday APRIL 21st - 2012 GUESTS : DR. HISHANT TAGEJA from the NATIONAL INSTITUTE OF HEALTH – Dr. Jeff Zonder – host doctor


We enjoyed being a part of the large THE GREAT LAKES AMYLOIDOSIS SYMPOSIUM in October with Dr. Jeff Zonder, Dr. Martha Skinner of Boston, Dr. Robert Kyle of Mayo, Dr. Giampaola Merlini, Pavia, Italy,and other notables in the Amyloidosis & Myeloma world.


We enjoyed being a part of the large symposium in October with Dr. Zonder, Dr. Martha Skinner of Boston Univ., Dr. Robert Kyle of Mayo and many other notables in the amyloidosis world.


October 16, 2010 ,we met at PALACE OF AUBURN HILLS - Auburn Hills, MI 48326 at the KARMANOS MM/AMYLOIDOSIS PATIENT DAY SYMPOSIUM Guest: Dr. Vaishali Sanchorawala, BUMC and Dr. Jeff Zonder


April 10th, 2010 our guest was Dr. Jeff Zonder


Our guests were Dr. Jeff Zonder and later in the day, Kathy Reynolds-Guided Imagery


Our guests in March 09 were Dr. Jeffrey Zonder and Linda Vanni Who spoke on pain management



Our guest in September was Dr. Shaji Kumar from Mayo/Rochester


3/15/08: Dr. Jeffrey Zonder, Hematologist at Karmanos Cancer Institute and new member of the ASG medical advisors, spoke to 20 something of us today at our Michigan Amyloidosis Support Group...... We had Al, AA and Familial family members present.... During a great tasting Mexican lunch (thx RJ), we each had a chance to ask questions of Dr. Zonder about our symptoms and treatments......Thanks to Cay for all her help.... and we missed so many others that were not feeling well today for one reason or another; you know who you are as I've talked to many - be well!...... We'll look forward to seeing everyone September 27, 2008 with Dr. Kumar, Mayo-Rochester and Christine Giresi about LLS Entitlements and the Patient Navigator Program w/ Diplomat Pharmacy.......

Sue Smith, ASG Michigan Facilitator


Our guest was Don M Benson Jr, MD PhD  Assistant Professor of Medicine & Education Coordinator,
Division of Hematology/Oncology,
Arthur G James Cancer Hospital &
Richard J Solove Research Institute,
NCI Comprehensive Cancer Center,
The Ohio State University College of Medicine


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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3/31/07: A great Amyloidosis Support meeting took place in Detroit this week end. There was sharing, caring, crying, empathizing and learning by the 20 patients and their guests. We missed a few of the oldies who could not come and enjoyed meeting a few new one guests....

Dr. Jeff Zonder told us about the new clinical trials that will be taking place in the future for amyloid research - check the Karmanos website www.karmanos.org for more details, Dr. Peter Vaitketvicius , Karmanos cardiologists, gave us an overview of what happens to the heart with amyloid present and what symptoms to look for and Clifton Scott motivated us to be the best we can be while living for today - a BIG THANKS to all of them!! And of course, Cay for arranging the beautiful breakfast and luncheon and Karmanos for being our host. It was a wonderful meeting!

Thanks to everyone!
Sue Smith
Ohio/Michigan Facilitator
www.amyloidosissupport.com
937-393-1135

NOTES FROM OCTOBER 2006 MEETING:

Another successful meeting Karmanos in Detroit...... Over twenty eager people met to discuss how amyloid has affected there bodies, their families and every aspect of their lives!

HOPE was the THEME and we had many success stories. Two of our ladies have had successful SCT's with 1 being out just 5 weeks and she looked GREAT!! The other lady has her FIRST birthday today and has resumed normalcy..... Other beautiful people have been given an almost CR, gaining weight and feeling life to the fullest! Our AA was not present although he sent his lovely wife. He had commitments with his children! Isn't it wonderful!! As the meeting progressed, 1 gentleman was upstairs collecting his stem cells for SCT. His wife and sister were with us to tell his story.

Thanks to Dr. Zonder, who now has competition for the best looking doctor at Karmanos, we got to know Dr. Muneer Abidi. His presentation was very informative as he kindly broke down & explained amyloid to his attentive listeners. We, in the amyloid world are very grateful to have Dr. Zonder and Dr. Abidi who have helped to form a consortium with hospitals in the Michigan area for patients who need transplants.

Thanks to Cay for all her hard work putting this meeting together. The full (not light) breakfast and the great tasting Chinese lunch, did you hear that! Chinese lunch was eagerly enjoyed by everyone, thanks to RJ from Celgene, who is a friend to Karmanos and the ASG. We had other doctors stopping by to introduce themselves and ask if there was anything they could do to help us and to tell us what a need there was for an amyloid support group..

November 4, while most were at Patient's Day in Boston, I was at the Dearborn Inn as Karmanos was sponsoring a MM Symposium. Lorrie Biard worked with me at an Amyloidosis Awareness table and speak to as many doctors as we could about amyloid. Drs. Gertz, Jakuboviak, Vescole, Abidi, Webb, Richardson and Dr. Zonder presented. It was such an honor to finally meet Dr. Gertz. I look forward to meeting the Boston team soon and the rest of the Mayo team. We are going to discuss that at the Leaders Retreat in June.


We had close to 20 people at our meeting, representing most areas of Amy. Primary, Familial, Care Givers, those who have lost loved ones.........we even had a family that lived a few blocks from another, and a family that grew up in the same town in Mexico as a family from another meeting. We had people from Ohio, Indiana, Illinois and Michigan.

The Hilton Family Hotels did a great job, as usual. Thank you Deborah, and your cast and crew.

Mary O"Donnell was selected by the group to be the "leader" of future meetings; and we will hear from her soon.

There were some Familial patients at the meeting, who had not yet contacted Boston about the new trials; and, we encourage them to do so. A reminder that the contact is Zareen 617-638-4494 zlakhani@amyloid.bu.edu

It was a joy and pleasure to meet everyone; this was the first meeting that I totally led, and administered. Had some great examples. Thanks for your prep help, Gloria, Carmen, and Sue.

Muriel Finkel, 10th October 2004

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Hello All,

Just wanted to tell everyone what an informative, supportive, caring group we had at the Detroit meeting and how wonderful it was to meet each and everyone of you. I needed to hear your story as much as I needed to tell mine!

I am also concerned about getting the message out to Drs. about Amyloidosis as that was a common theme among all of us. I will get information about Amyloidosis out to my Dayton area Drs. via amy pamphlets or by knocking on doors. Then the task of finding ways to get Drs. to test for amy via red congo stain ASAP as we know early detection and aggressive therapy is a must to control this disease......many of our loved ones would be alive today if this would have happened!

Again thanks to our dear Muriel for conducting a fruitful, informative meeting - food was abundant and delicious - Muriel worked hours on the food!!!

Take care to all my new family I met this weekend.

Sue Smith, 10th October 2004



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