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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.org


Florida - Tampa (see Jacksonville and MIAMI too)

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.org
866-404-7539 Toll Free – Please Leave a Message
Date: Saturday February 24th 2018
Time: 8:30 am -2 pm
Location: New Meeting Room: David Murphey and Ferman Family Conference Rooms in the Stabile Research Building
Moffitt Cancer Center
12902 USF Magnolia Drive Tampa, FL 33612
Complimentary Light Breakfast and Lunch Served
Click here to download directions (Word Document)
Comments: Guests: TBA
Notes on previous meetings: February 25, 2017 our guest were Dr. Jeff Zonder Karmanos/Detroit and a rep from Alnylam and Prothena (NEOD)


Saturday February 27, 2016, our guest was Dr. Taimur Sher from Mayo Jacksonville. We had a new room for this meeting.

Instead of the Owls Den we met in Trustees Board Room Across from the Ferman and Murphey Conference Rooms.

We had over 40 patients and caregivers at our meeting Saturday. For some it was it was their first meeting but the rating sheets tell us it was a good one for all. Most of our patients were AL. Some were treated at Mayo (Rochester and Jacksonville) and some Boston Medical, and some Moffitt. A few were treated at other Florida hospitals. We had several survivors who had been treated more than 5 and 10 years ago (one 15 yrs ago).

Dr. Sher did an overview of alkylators (melphalan and cytoxan are alkylators), including the newer one, bendamustine, IMIDS (Revlimid is an IMID)-newest one is pomalidomide (pom) and he went over the risks and benefits of dex too.The thrust being if the patient leaves response, there are lots of drugs in the arsenal. We discussed the fact that there was not yet an approved drug to treat amyloidosis (all of above comes from the Multiple Myeloma world) and how Millenium/Takeda was going to try to get approval from FDA for IXAZOMIB for amyloidosis and Prothena was aiming for approval one day for NEOD 001.

Dr. Sher and I also went over the NEOD001 trials including the new PRONTO trial for previously treated with cardiac involvement.

We watched the video (www.AmyloidAware.com ) and discussed the booklet (gave copies to Christine with a promise of more). It was so wonderful to have her join us. We want her at all of our Florida meetings: -)

We had the newbies introduce themselves first and then we had updates from the veterans. Moffitt gave us a new larger room for this meeting and we are hoping to get an even larger one next time.


Saturday February 21, 2015 our guests were Janice Wiesman – Boston Univ. Amyloid Clinic – Neurologist and Peripheral Neuropathy expert and Ken Shain MD, from Moffitt Cancer Center.

After a half hour of meet and great and eat we met our guest doctors, Janice Wiesman from BU and Ken Shain from Moffitt. A quick watch of our awareness video http://www.amyloidosissupport.org/NervesandNeuropathyASG.pdf and we started by doing an overview of our current clinical trials (chemotherapies listed on our website when you go to menu and click on the Important Clinical Trials Link).

We then took a break (lots of free consults with our doctors) and addressed the newest clinical trial NEOD001 from Prothena. Our rep, Spencer, was there to present and do the Q and A. Although all the slots are now filled for the Phase 1/ 2 Trial where everyone gets the drugs, some may not qualify so they are taking waiting lists. The new Phase 3 Trial for newly diagnosed patients (cardiac involvement) is a trial we would like to see at all centers that treat the newly diagnosed. Dr. Shain said that Moffitt was reviewing it as we speak.

This took us until lunch and more free consult time with our doctors, after which Dr. Wiesman gave a wonderful neuropathy presentation. Hers was slightly updated and a bit different from the one on our website http://www.amyloidosissupport.org/NervesandNeuropathyASG.pdf . The Q and A was quite robust and Dr. Shain enjoyed is as much as all of us. We then polled our attendees (over 30) to find out who were 10+ yr. survivors (a few) and 5 + (several) and 3-5 + (several) and 1-3+ (several) and newbies (few weeks to one year) several. After brief introductions and overviews of treatments etc..(we actually had one patient on bendamustine as nothing else had worked) it was time to bid adieu to our guests.

Our doctors were great, our patients and caregivers were great. (hope to have time for a breakaway session next time). Moffitt is wonderful to give us such a great meeting facility as well. We thank all involved. Please rate us at http://greatnonprofits.org/org/amyloidosis-support-group-inc .

See you all again soon. Remember Amyloidosis Support Groups is on Facebook and Yahoo . You never have to feel or be alone.

Please come to Jacksonville for the next meeting. If you want to come but it is a hardship, please let us know.


March 1, 2014 Saturday our guest was Doctors Taimer Sher Mayo/Jacksonville


Our guests February 9, 2013 were Guests- Taimur Sher MD – Mayo/Jacksonville and Dr. Shain, Moffitt Tampa


Our guest February 3, 2012 was Dr. Taimur Sher of the Mayo/Rochester and Dr. Ochoa of Moffit


Our guest February 5, 2011 was Dr. Suzanne Hayman – Mayo Rochester – over 20 patients and care givers, learned, shared and supported each other and we greatly anticipate the next meeting.


Our Guest FEBRUARY 6, 2010 Dr. Rachid Baz, Lourdes from LLS and Muriel and Steve Finkel from ASG- over 20 people received support, education an cameraderie


Our Guest in August – Dr. Jeffrey Zonder was super and we look forward to 2009


Our guest - Dr. Morie Gertz Mayo/Rochester MN drew an eager group of close to 40 and was wonderful Dr. Alsina dropped by and the meeting was the best.


Dr. Rudy Hrncic from the Binding Site was wonderful at the last meeting and we look forward to the next.

Guest speak at March 10th meeting was Dr. Candido Rivera – Mayo/Jacksonville
(Dr. Rivera's BIO in rtf or MS Word Doc)



Support Groups

FULL 2017 CALENDAR

**TTR & Familial**

AZ/Southwest (Phoenix)

Carolinas (Charlotte/Durham)

Chicago

Florida (Jacksonville)

Florida (Miami)

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Indianapolis

Kansas City

Louisiana

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Maryland (Hagerstown)

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Michigan/Ohio

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New York City

New York (Rochester)

Ohio/PA

Portland/Seattle

Philadelphia

Rocky Mountains (Denver)

Southern California (L.A.)

Texas (Dallas)

Texas (Houston)

Utah


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