ATTR Wild Type and Hereditary Amyloidosis
Past Meetings
The ATTRwt and ATTRv Hereditary (or Familial) Amyloidosis support group meetings began in 2010 in Chicago and have been a mainstay ever since, occurring every other year since 2011. This page features the notes and schedules of those early years in an archived presentation as reference and educational resources for anyone wanting to learn more about these types of Amyloidosis. The vast majority of the information you will find here is still applicable and relevent today, and is why we keep an on-running archive accessible for everyone to read.
Transcriptions and Notes on the 2019 Meeting
Transcripts of Presentations
Diagnosis of Amyloidosis - Dr. Picken Click Here for PDF PresentationATTRwt Amyloidosis - Dr. Maurer Click for PDF Presentation
Hereditary Transthyretin Amyloidosis (hATTR) - Dr. Ruberg Click for PDF Presentation
ATTR Organ Transplant - Dr. Dispenzieri. Click Here for PDF Presentation
Genetics of TTR Amyloidosis - Katie Agre (MAYO) Click Here for PDF Presentation
GI (Gastro-Intestinal) - Dr. Clarke. Click Here for PDF Presentation
Introduction to the Amyloidosis Registry - Click Here for PDF Presentation
Cardiac: Amyloidosis and the Heart - Dr. Grogan. Click Here for PDF Presentation
Nerves and Neuropathy - Dr. Weisman Click Here for PDF Presentation
Central Nervous System and Ocular Involvement in hATTR - Dr. Karam Click Here for PDF Presentation
Imaging Amyloid - Dr. Wall Click here for PDF Presentation
Alternative Therapies - Dr. Berk Click here for PDF Presentation
Practical Help and Assistance Devices - Sarah Boyd (MAYO) Click Here for PDF Presentation
Health Insurance and Financial Assistance guide from Triage Cancer
NOTES AND SOME Q AND A FROM THE MEETING
Pharmaceutical Presentations
INTELLIA CRISPR
Akcea
Alnylam
Corino (PDF)
Eidos
Ionis
Pfizer
Prothena
Transcriptions and Notes on the 2017 Meeting
2017 ASG Biannual Meeting Notes (PDF)
2017 ASG Biannual Meeting Questions and Answers (PDF)
Transcripts of Presentations
Nomenclature. - Dr. Benson Click Here for PDF PresentationGenetics.- Agre, M.S., CGC. Click Here for PDF Presentation
Diagnosis.- Dr. Picken Click Here for PDF Presentation
Cardiac - (Heart before and after TTR)- Dr. Grogan. Click Here for PDF Presentation
Neuropathy- (Nerves before and after TTR) -Dr. Waddington-Cruz. Click Here for PDF Presentation
GI (Gastro-Intestinal) Dr. Clarke. Click Here for PDF Presentation
Solid Organ Transplant - - Dr. Dispenzieri. Click Here for PDF Presentation
Non Clinical Trial Treatments -Dr. John Berk Click here for PDF Presentation
Alnylam Presentation - Pritesh Gandi Press Release Click Here
Ionis Presentation - John Berk Press Release Click Here
Pfizer Presentation - Leslie Amass Press Release Click Here
Prothena Presentation - Wagner Zago Press Release Click Here
----AGENDA FROM 2015----
8:00 - 8:05 - Welcome - Muriel
8:05 - 8:20 - Why are we here?(Overview) - Click for Dr. Gertz Introduction)
8:20 - 8:40 - TTR Amyloidosis mt and wt - (Overview)- Click for Dr. Berk's Presentation
Q and A - (5 minutes)
8:45 - 9:05 - NON ATTR - Fibrin. Apo. Alect2 others - Dr. Benson
Q and A - (5 minutes)
9:10 - 9:30 - TTR and NON TTR - Kidney- When is the kidney involved and why?- Dr. Stern
Q and A - (5 minutes)
9:35 - 9:55 - Biopsy: why Fat Pad not always the way- what organ and when and what are the risks if any? - Click for Dr. Picken’s Presentation
Q and A - (5 minutes)
10:00 -10:20 - Genetics (who should be tested, when, why, how, who?) - Click for Sara Met’s presentation
Q and A - (5 minutes)
BREAK- (15 minutes)
10:35 - 10:55 - Neuropathy- (Nerves before and after TTR)- why are nerves affected and what can be done, Carpal Tunnel, PN, AN - Click for Dr. Wiesman’s Presentation
Q and A - (5 minutes)
11:00 - 11:20 - Cardiac - (Heart before and after TTR)- why is heart affected, what happens to the heart and what can be done - Click for Dr. Grogan’s Presentation
Q and A - (5 minutes)
11:25 - 12:00 - Solid Organ Transplant - when - which variants do best? Trials - when?- Click for Dr. Dispenzieri’s Presentation
Q and A- (5 minutes)
12:05-1:00 - LUNCH
1:00 - 1:15 - Click for Alnylam Presentation
Q and A (5 minutes)
1:20 - 1:35 - Click for ISIS Presentation
Q and A (5 minutes)
1:50 - 2:10 - Pfizer
Q and A (5 minutes)
2:15 - 2:35 - Non Clinical Trial Treatments (diflunisal, doxycycline, Green Tea/ EGCG, Anti-Oxidants, Ursidal, Tudca others) -
Click for Dr. Berk's Presentation
Q and A (5 minutes)
Familial Survey Results - Click for Isabelle Lousada’s Presentation
Afternoon Breakout Sessions
Neuropathy - (Peripheral and Autonomic) - OH, GI, CT, etc., -WiesmanCardiac - (Symptoms, coping, treatments)- Grogan, Hanna, Heitner, Judge and Maurer
NonATTR variants, eye issues, and organ transplants - (including ALEC2) - treatments, face and eye issues, kidney transplants, heart, liver too - Picken, Skinner, Stern, and Zeldenrust
Genetic Issues - (When to tell the kids, when should I be tested? How?)- Sarah Mets
Clinical Trials - (past, present and future) - Clinical Trial Reps along with Benson, Berk, Dispenzieri. Gertz and Kelly
Caregiving and Coping - Mayo- PT- Katie Traver, Mayo OT-Sarah Dahlhauser, VA RN- Jean Adams, and ASG Paula
Q AND A WITH DOCTORS FACILITATED BY DR. GERTZ - Notes from Q and A (thanks to Joe)
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2015 AMYLOIDOSIS SUPPORT MEETING SPEAKERS
Dr. Morie A Gertz, M.D., M.A.C.P., Chair. Roland Seidler Jr. Professor and Chair Department of Medicine. College of Medicine. Mayo Distinguished Clinician. Mayo Clinic, Rochester, MN. Departments: Hematology, Cancer and Transplant Centers. Special interest: Amyloidosis.Dr. Merrill D. Benson, Professor of Medicine, Professor of Medical Genetics. Indiana University. 2003 Pasteur-Weizmann/Servier International Prize in Biomedical Research. Interests: Amyloidosis, regula¬tion of gene expressions; synthesis and metabolism of plasma proteins.
Dr. John L. Berk, Associate Professor of Medicine. Clinical Director, The Amyloidosis Center. Director, Localized Amyloid Clinic. Boston University School of Medicine. Interests: PI, Diflunisal Trial - FDA & NIH funded Radiotherapy for tracheobronchial Amyloidosis.
Dr. Angela Dispenzieri. Mayo Clinic, Rochester, MN. President International Society of Amyloidosis. Research Interests: Plasma cell disorders like primary systemic amyloidosis, POEMS syndrome, mul¬tiple myeloma, and cryoglobulinemia.
Dr. Martha Grogan. Assistant Professor of Medicine. Mayo Clinic, Rochester, MN. Cardiovascular Diseases. Interests: Amyloid heart disease; Echocardiography; Reversible cardiomyopathies.
Dr. Mazen Hanna. Director of the Heart Failure Intensive Care Unit and Co-Director of the Amyloid Program. Cleveland Clinic. Interests: cardiomyopathy, heart failure, heart transplantation and mechanical circulatory assist devices, pulmonary hypertension, and cardiac amyloid.
Sarah Mets, M.S. Mayo Clinic. Department of Medical Genetics, Cardiovascular Division
Dr. Daniel Philip Judge. Director, Center for Inherited Heart Disease. Associate Professor of Medicine. Johns Hopkins Heart and Vascular Institute. Interests: Amyloid Diseases, Familial, Cardiomyopathy, Cardiovascular Diseases, ARVD - Genetics and Pathogenesis.
Dr. Mathew S. Maurer. Medical Director, HCM Center at New York-Presbyterian/Columbia. Advanced training in heart failure and cardiac transplantation. Specializes in heart failure and preserved ejection fraction.
Dr. Maria M. Picken, FASN. Professor. Director, Transplant Pathology. Interests: Amyloid, Genitourinary Pathology, Kidney Transplant and disease. Loyola University Health System, Maywood, IL.
Dr. Jeffrey W. Kelly, Ph.D. Co-founder of FoldRx Pharmaceuticals, Boston, MA. 2003 - Enabled Vyndaqel (Tafamidis) European Drug Agency Approval in 2011 and Japanese approval (2013). This compound was discovered by, Professor Emerita. the Kelly Laboratory to treat Familial Amyloid.
Dr. Martha Skinner Interim Director, Amyloidosis Center.. Director of Special Projects, Boston University School of Medicine. Interests: Treatment and research on Amyloidosis. Past President, International Society of Amyloidosis.
Dr. Lauren D Stern. Assistant Professor of Medicine and Nephrology. Boston University School of Medicine. Interests: End stage renal disease; Pregnancy related kidney disease; Amyloidosis; Kidney stones; Electrolyte disorders.
Dr. Janice F. Wiesman, Adjunct Assistant Professor of Neurology. Boston University School of Medicine. Interest: Electrodiagnostic Medicine.
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).
(TTR-FAP) Long-term effects of tafamidis for the treatment of transthyretin familial amyloid polyneuropathy (PDF)
ASG Letter to the FDA on TAFAMIDIS Rejection (pdf)
TAFAMIDIS STUDY - PRESENTED TO FDA IN 2012 (PDF)
OUR 2013 MEETING NOTES
FAMILIAL AMYLOIDOSIS CONFERENCE NOTES AND PRESENTATION PDF
Guest Doctors:
Morie Gertz
Steven Zeldenrust - Introduction DOC and Slide Show PDF
Angela Dispenzieri
John Berk and diflunisal
Martha Skinner - Presentation PDF
Merrill Benson and Isis = Presentation PDF
Teresa M Kruisselbrink, CGC Presentation PDF
A.K. Wang-Neurologist - Presentation PDF
Janice Wiesman – Neurologist
Martha Grogan-Cardiologist - Presentation* PDF
Mat Maurer-Cardiologist
Mazen Hanna-Cardiologist
Maria Picken-Pathologist
Jeff Kelley-Scientist
Isis- Elizabeth Ackerman and Merrill Benson - Presentation PDF
Pfizer- Janske Aarts and Leslie Amass - Presentation PDF
Alnylam-Jared Gollob and Maryellen Livingston - Presentation PDF
* © 2013 Mayo Clinic - The images are copyrighted by The Mayo Clinic and are for individual educational use. The images should not be reproduced (such as in a non Mayo presenter's talk) or used for commercial purposes.
OUR 2011 MEETING DETAILS:
2011 Details in PDF
OUR 2010 MEETING FEATURED THE FOLLOWING GUESTS:
Dr. Martha Skinner – Boston University’s magic bullet for all types of amyloidosis
Dr. John Berk – Boston University’s leading doctor for familial amyloidosis
Dr. Morie Gertz – Mayo Clinic’s chief of Medicine and superior knowledge of all of the amyloidoses
Dr. Steven Zeldenrust – Hematologist and expert on familial amyloidosis too
Dr. Merrill D. Benson – broke out most of the variants of the inherited form of amyloidosis
Dr. Peter Dyck – he “wrote the book†on peripheral neuropathy
Clinical Trial Investigators
Dr. Peter Dyck and Dr. John Berk
HELD ON 10-31/11-1-2009 IN THE CHICAGO AREA
Familial Amyloidosis
Yesterday, today, and tomorrow
by Dr. Skinner (PDF Document)
Transplantation for Amyloidosis - 18 Years Later
by Dr. Steven Zeldenrust
Presentation by Dr. Marcia Waddington - Cruz
Thank You flyer for all who spoke and attended
DAY 1 OVERVIEW
The first familial only meeting for patients as been a great success thus far. It started with a meet and greet Friday night at the local Marriot Courtyard in Wood Dale....
There were at least 50 people there and all enjoyed the 5-9 pm nibbles and sharing and eating and talking and eating.......
After a hardy breakfast all met at Finkel Supply along with those that drove in, flew in late, or were local.....there were over 90 people..!!!!! Every doctor said they had never seen so many familial in one room before....and those wonderful doctors Dr. Martha Skinner, Dr. Morie Gertz, Dr. Steven Zeldenrust, Dr. John Berk, Dr. Merrill Benson, and Dr. Jared Gollob, Dr. Walter Singleton, Dr. Donna Grogan and Dr. Marcia Waddington-Cruz (the latter four part of on going trials) were informative, educational, helpful, supportive and in some cases even humorous. All returned to the hotel for a wonderful dinner and come back tomorrow for a Q and A session followed by lunch and then...home....
It was great to see how the inclement weather in various states including our own didn’t keep anyone away.....they came from the entire Pacific Coast.....Northeast, Middle Atlantic ......South, West and the Midwest......and even snowed in Denver....relatives meeting for the first time.....or reconnecting......and maybe even a new variant or two discovered....
Will fill all in on the Q and A should anything new and exciting pop up.....
DAY 2 OVERVIEW
We started bright and early (for us on a Sunday 8:30) after a hardy breakfast at the hotel with a wonderful open forum Q and A.
The Doctors on the Panel were Drs. Benson, Berk, Zeldenrust and Drs. Grogan and Dr. Waddington-Cruz. The Moderator was
Dr. Gertz and I was part of the audience of patients, family members and care givers.....Dr. Grogan had to leave to get back but
Dr. Waddington – Cruz of Brazil stayed on until the end.
The group wrote down questions and Dr. Gertz fielded them and assigned them to each doctor for answers and discussion... ..It was quite lively, educational, occasionally humorous and always informative and right on. I would like to ask permission of all of the doctors to pass on the slides to all of the patients at the meeting.....hopefully we will get it.....
For a doctor to give up one day for our meetings is most appreciated....to give up two is so far above and beyond and showed us all how necessary it was for the familial amyloidosis patients of the USA...to have their own meeting...to understand their own disease. ..to learn to cope, and find out what is being done to help them and future generations.....
I am having the Q and A gone over by the doctors for their o.k. and then will put some of them out there for all....we don’t want to break any privacy issue....and we do thank the doctors again for their help, support, education, research, treatment, and anything else I may have left out.....oh forgot ...we finished up with a great lunch too, remember....FOOD IS SUPPORT.... and thank you to those members of the Chicago Area Support Group for helping out as well as Finkel Supply employees and dear friends......
All have been taken to the airport except for the night flights and those staying on a bit for site seeing.... The Marriot Courtyard gave all late check out and was so helpful as were out caterer whose staff VOLUNTEERED to stay on and serve.... .and wonderful Brook Furniture Rental for loaning us the chairs at NO CHARGE.....
This meeting was all about giving........and it truly is a wonderful thing to be able to do.........
Dr. John Berk of Boston - our doctor of the month for December
Dr. Martha Skinner of Boston - and Muriel of the ASG
Dr. Merrill D. Benson of Indiana University
Another name used for the disease in Portugal, named for Mário Corino da Costa Andrade TTR-FAP(Corino de Andrade's Disease)