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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

New York - Rochester/Buffalo/Syracuse

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).

Contact Person: Muriel info@amyloidosissupport.com
866-404-7539 (Toll-Free)
Paula Schmitt pschmitt_98@yahoo.com
Maryann Kraft thumbelinamk@yahoo.com 585-334-7501
Date: Saturday, September 28, 2019
Time: 8:30am – 1:30 pm light breakfast and lunch served
Location: Rochester General Hospital
1425 Portland Avenue
Rochester, NY
Weiner Conference Rm (ground floor)
Park in Portland Ave RAMP
Enter Hospital on ground floor
Follow signs
Comments: Guest: Anita D’Souza MD from MCW
Notes on previous meetings: Saturday, June 23, 2018 Guest: Dr. Omar Siddiqi (BUMC)

July 15, 2017 Saturday our guest was Dr. Ron Go Mayo/Rochester

July 16, 2016 our guest was Dr. John Berk (via skype) Boston University Amyloidosis Clinic

April 11, 2015 our guest was Jeff Zonder MD – Karmanos - Detroit

Guest September 2014 was Taimur Sher MD. Mayo/Jax

Our Guest Saturday May 17, 2014 was: Anne Renteria MD Hemo/onc Boston Univ. Amyloid Clinic

Our Guest Sat. August 24, 2013 Dr. Nelson Leung - Nephrologist - Mayo Clinic, MN. Informative meeting covering Amyloidosis and the systemic effects on the renal system. Discussion and Q&A topics concerning Blood pressure issues related to kidney disease and meds available and Kidney Transplant and considerations in that process. Dr. Leung is a knowledgable and caring amyloidosis specialist who's expertise was appreciated by all attendees.

Our Guest Sat. April 20, 2013 was Dr. Taimur Sher from Mayo/Jacksonville Exceptional teaching skills , compassionate and personable. Received High marks on our meeting evaluation sheets from all attendees. He was extremely helpful and Very Much Appreciated. Looking forward to having him as our Guest Speaker again in the future.

Our Guest: SAT. September 29, 2012 was Dr.Shaji Kumar from Mayo/MN

Our Guest: Saturday September 17, 2011 was Dr. Jeff Zonder – Karmanos/Detroit

It was and inspirational, Educational and Supportive meeting in Upstate NY .BIG Thanks to Dr. Jeffrey Zonder our guest speaker who drove from Detroit to Rochester, NY accompanied by his sweet daughter.... (quality family time) We had 17 in attendance and LLS rep Therese O'connor Social worker at RGH provided us with current info on the LLS co-pay program and financial aid program and more about the supports LLS offers. (Thanks Therese, nice to see you again).

Dr. Zonder is excellent at translating complicated medical processes. Everyone added to their knowledge base. He is always down to earth and has been a guest speaker at many ASG meetings and involved in many amyloidosis trials.

Our new attendees were Impressed and appreciative of how our meetings are run..... so much is gained from sharing patient/caregiver experiences and getting feed back from the "Expert" Guest physician.

A Big THANK YOU to MaryAnne & Don L for their help with setting up the meeting and also my husband David too.

Love & Hugs to Muriel for ALL she has provided for us. MWAH!

MUCH GRATITUDE TO RGH - Public Relations Dept. for hosting our meetings. We had a different room and appreciate the Services that went into finding the room for us and setting it up etc. and providing parking for us too. RGH is TRULY Caring for their Community!

MaryAnn Kraft
Upstate NY co-facilitator
Amyloidosis Support Groups
National Organization Member of NORD
"Don't Take Your Organs to Heaven, Heaven Knows We Need Them Here"

Our guest Saturday. MAY 14, 2011,Dr. Raymond Comenzo was a big hit with the thirty attendees and three local doctors kind enough to stop by and visit with our group.

Our guests October 2, 2010 were Dr. Suzanne Hayman from Mayo Rochester, who was joined by Dr. Carlos Marroquin. Director Kidney transplant program at U of R. and George Charpied, Director Speech Pathology at U of R.

Our guest June 12, 2010 was DR. DAVID SELDIN – BUMC – AMYLOID PROGRAM

Our guest on August 29 was - Dr. Suzanne Hayman from 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 “people person” personality enhances her superior knowledge of amyloidosis and makes it fun for all to learn and receive and give support.

Our guest in May was - Dr. Jeffrey Zonder – Karmanos/Detroit And he shared his wisdom and warmth with us all....as did Dr. Chen from the Cardiology Dept.

Our Guest on 9/27/08 was Dr. Martha Skinner - BUMC. Great Meeting.... 48 in attendance. (Nice to share the event with our Canadian neighbors too...6 in all came to participate. Dr. Skinner was amazing, she knew so many attendees and if she didn't know you, she knew you by the end of the meeting. We had a mix of Primary, Familial, AA and Senile (we prefer to call it mature :)

Dr. Skinner heard everyone’s concerns and proceeded to diagram different aspects of amyloidosis and address everyone’s concerns There was a lot of ground to cover and the morning flew by.

Our lunch break was delicious and we also celebrated Anne & John's 50th Wedding anniversary! We had several anniversaries at this meeting.

I want to thank all those who were able to attend and those who helped spread the word and bring others to the meeting. Our Breakaway sessions are the part of the meeting where we find the most common ground amongst each other. No matter what phase you are dealing with we try our best to identify with and encourage one another.

Remember when we first got our diagnosis.... how alone and knocked down we felt? I believe there is strength in numbers....we share our knowledge & experiences, we start to see some light, learn the lingo, understand the disease process, learn how to address our doctors, discover the centers of excellence, we become empowered through the support of one another...


Our guest - Dr. Jeffrey Zonder/ from Karmanos was great and helped to make our July meeting a success.

GUEST for April, 2008 was Dr. Sukru Emre, MD FACS
Professor of Surgery and Pediatrics
Chief, Section of Transplantation and Immunology
Director, Yale-New Haven Transplantation Center
Department of Surgery
Yale School of Medicine

Dr.Karen VanHoeven From The Binding Site was so informative and helpful

Dr. Merrill D. Benson – Indiana University was a wonderful guest and informative, fun and casual. Some of his credentials are listed below…….

The Amyloid Research Group at the Indiana University School of Medicine: http://www.iupui.edu/~amyloid/team.htm

First recipient of the international Pasteur-Weizmann/Servier Prize: http://www.servier.com/pro/html_news_home/pasteur_remise1.asp

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We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.

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