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
www.amyloidosissupport.com
National Organization Member of NORD
www.rarediseases.org
"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...
MaryAnn
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
