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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


Florida - Jacksonville (see MIAMI AND TAMPA 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 muriel@amyloidosissupport.org
866-404-7539 (Toll-Free)
Paula Schmitt Paula@amyloidosisSupport.org

Alternative contact is:
Kathy Wilson kalawil@cfl.rr.com

Date: November 12, 2016
Time: 9am to 3pm (flexible)
Location:

The meeting will be held in Room 153 of the Stabile North Building. You get to that building by coming down William Davis Parkway to Mellish Drive. Left on Mellish and Stabile North is a 6-floor building. There is parking all around it. Click here for map of Campus.Click here for map of Campus.

Comments: Guest Dr. Taimur Sher Mayo/Jacksonville
Notes on previous meetings: The meeting at Mayo on Saturday June 11, 2016 was Dr Jeff. Zonder's first trip to Mayo Jacksonville, and the 10th anniversary of the very first support group meeting that I attended as a newly diagnosed patient. We had several new patients attending from as far away as Texas, Alabama and the Orlando/Tampa area. Most were AL but we also had AL with MM, an APO A/1, and 3 patients with different types of localized amyloid. We discussed the current trials and learned more about the different types of chemotherapy, as well as the new antibody therapies. We were fortunate to have Dr. Sher's nurse Christina attend. She has taken a great interest in amyloidosis and has gone back to school to become a Nurse Practitioner. She loved hearing the patients perspective throughout the day and will be a fantastic contact for us at the hospital. She urged those attending to utilize their nurses when they have a question, or need to contact the doctor, etc. Please do make an effort to attend a meeting if one is in your area. You will walk out knowing more about the disease as well as making a few new friends.


The Jacksonville meeting at Mayo on Saturday, Nov. 7, was fun and educational. You might think "fun" is an odd description for a meeting about a rare serious disease, but the news about future treatment possibilities and upcoming trials gives us much to celebrate. Our GUEST: Dr. Tamiur Sher Dr. Taimur Sher, spent five hours with us and besides artistically describing Amyloidosis and its cousins and answering lots of questions, he went around to every individual or couple and talked to them one on one. We are always touched by his warm and friendly manner and grateful for the generous amount of time he devotes to us and the Amyloidosis community. Hopefully, the newbies left feeling much encouraged.

The questions posed by patients and caregivers were pertinent, well-thought out and appreciated by the other participants. Dr. Sher's answers were affirming, comprehensive and comprehensible. If you haven't had the pleasure of meeting him yet, you owe it to yourself and to your loved ones to come to our meetings where he is our guest. Those who are lucky enough to have him as their doctor are in the excellent hands of a most caring, knowledgeable physician and friend. Thank you, Dr. Sher, you are much loved. And thank you to all you warriors who made the effort and took the time, traveling from near and far (as far as Holland, I might add) to attend Saturday's meeting in Jacksonville.

Until we meet again,

Kathy Wilson
Dx 2003 MM, AL Amy
SCT 2013


Saturday May 30, 2015 our guest was Dr. Tamiur Sher


Saturday May 17, 2014 our guest was Dr. Francis Buadi Mayo/Rochester


November 16TH Saturday our guest was Dr. Vivek Roy Mayo/Jacksonville


SAT MAY 4, 2013 our guest was Taimur Sher MD


March 31, 2012 our guest was Dr. Taimur Sher from Mayo/Jax.


September 17, 2011 our guest was Dr. Francis Buadi – Mayo/Rochester - Many new people and renewed friendships with others while Dr Buadi very thoroughly and thoughtfully responded to questions from each individual's amyloidosis experience. It is amazing how much we have advanced in the understanding of amyloidosis just since the last meeting here only six months ago. We ran the gamut from newbies to long term survivors, SCT or chemo only survivors and their caregivers and nurses who wanted to learn more. We wish everyone who was diagnosed with this disease in whatever form it takes could attend one of these support group meetings.


November 6 , 2010 What a great meeting we had today in Jacksonville. There were familial faces and some new ones too. We had patients there with AL, AL & MM, and 2 with localized forms of the disease. Delilah and her dad were both delightful and I am so glad to have been able to meet them. It always special when you get to meet someone face to face after talking to them here on the list. Her mom continues to do well following her recent SCT at Mayo. Kathy Wilson brought a special treat today that everyone got to try. There is a business in her hometown that is well known for its chocolate covered potato chips!!! Oh my, they were yummy!


GUESTS MARCH 6, 2010 - DR. JONATHAN KAUFMAN – EMORY AND DR. VIVEK ROY MAYO/JAX. WERE WONDERFUL


Our Guest in Oct. 09, Dr. Candido Rivera was informative, Supportive and educational.


Our Guests 1/31/09 were Dr. Vivek Roy and LLS rep Lynette Mills


May 17. 2008 - Our guest was Dr. Candido Rivera
http://www.mayoclinic.org/bio/10861505.html
http://mayoresearch.mayo.edu/mayo/research/staff/rivera_ce.cfm


1/12/08

The Jacksonville meeting went very well…Dr. Roy of Mayo/Jacksonville was informative and helpful and the Leukemia Lymphoma Rep (Lynette) made us aware of our $500.00 stipend and other entitlements from the LLS. They are on our website under patient and caregiver resources or you can go direct to www.lls.org. In Florida, even if you lost a love one you can collect on receipts if they were incurred during the fiscal year. Each state and district seems to have the ability to push the envelope in a different way.


7/28/07

Guest Dr. Vivek Roy and Dr. Rudi Hrncic from the Binding Site
Publications - Vivek Roy, M.D.
Research Bio:http://mayoresearch.mayo.edu/mayo/research/staff/roy_v.cfm
Postgrad on Line Article: http://postgradmed.com/issues/2006/06/093/


1/20/07 - Our guests were Dr. Vivek Roy and Ms. Deborah Slappey Pitts. They contributed to what was said was our best Florida meeting yet. We hope to be back in Jacksonville in the fall.
http://www.deborahslappeypitts.com/
Publications - Vivek Roy, M.D.
Research Bio: http://mayoresearch.mayo.edu/mayo/research/staff/roy_v.cfm
Postgrad on Line Article: http://postgradmed.com/issues/2006/06/093/


Support Groups

FULL 2017 CALENDAR

**TTR & Familial**

AZ/Southwest (Phoenix)

Carolinas (Charlotte/Durham)

Chicago

Florida (Jacksonville)

Florida (Miami)

Florida (Tampa)

Georgia/Alabama

Indianapolis

Kansas City

Louisiana

Maryland (Baltimore/D.C.)

Maryland (Hagerstown)

Massachusetts (Boston)

Michigan/Ohio

Minnesota/Upper Midwest

Nevada (Las Vegas)

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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