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New Trial
Hot Alnylam News – Expanded Access
EAP – PATISIRAN -hATTR
For Hereditary ATTR Patients
w/Polyneuropathy (FAP)
Click Here!

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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


Familial(Hereditary) and Wild Type TTR (Senile) as well as other lesser known types.

SUPPORT MEETING
Saturday October 28, 2017, and Sunday , October 29, 2017
Friday Night Meet and Greet October 27. 2017
Register Here - Click!
Email Info@AmyloidosisSupport.org



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Hot Alnylam News – Expanded Access
hATTR– All get the drug- No placebo
To qualify for below you must have ATTR w/polyneuropathy and meet other criteria
Expanded Access Protocol of Patisiran for Patients With Hereditary ATTR Amyloidosis (hATTR)
Call your amyloid doctor to see when this will be available in your area. Should open at many centers soon.
Follow the trial on clinicaltrials.gov to see added locations.


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Scheduled guest “amyloidologists” for 2017

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, Director Cardiac Amyloid Clinic
Mayo Clinic, Rochester, MN. Cardiovascular Diseases. Interests: Amyloid heart disease; Echocardiography; Reversible cardiomyopathies.

Dr. Frederick Ruberg, BU Amyloid Center
Associate Professor of Medicine and Radiology at Boston University School of Medicine and the Director of the Advanced Cardiac Imaging Program at Boston Medical Center

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.

Katherine (Katie) Agre, M.S., CGC
Genetic Counselor, Mayo Clinic. Department of Medical Genetics,
Cardiovascular Division

Emily Brown, MGC, CGC
Certified Genetic Counselor, Johns Hopkins Hospital, Center for Inherited Heart Disease

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. Michael Polydefkis, Johns Hopkins
Director, Cutaneous Nerve Lab.
Professor of Neurology

Dr. John O. Clarke
Director, Esophageal ProgramClinical, Associate Professor Gastroenterology & Hepatology, Stanford University School of Medicine

-----------------------------------

------------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, ANClick 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 doneClick 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 – 1:15Click 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., -Wiesman
Cardiac - (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).


  • Amyloidosis Awareness: Illustrated Booklet for Patients & Physicians.
    Available for online distribution:
    [English] [Spanish] [Portuguese] [French] [Italian] [German] [Dutch] [Japanese]

  • (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

  • Pfizer Slide Show (pdf)
  • Decoding Familial Amyloidosis (pdf)
  • Dr. Skinner's Familial Amyloidosis Presentation (pdf)
  • Dr. Zeldenrust's "Transplantation for TTR Amyloidosis" (pdf)
  • Dr. Dyck's Notes (doc) and Presentation on Peripheral Neuropathy (pdf)
  • Dr. Judge's Slide Show for Cardiac Amyloid (pdf)
  • Dr. Picken's pathology presentation text and Familial Amyloidosis from the Pathologist’s perspective (pdf)
  • Dr. John Berk's The Diflunisal Trial (pdf)
  • Clinical Trial slides from Alnylam Pharmaceuticals. (pdf)
  • Slides from ISIS Clinical Trial (pdf)
  • Pfizer Slide Show – email Muriel for Power Point presentation muriel@finkelsupply.com
  • Support Meeting Agenda (pdf)
  • Notes from Familial Meeting by Patient Attendee (pdf)
  • Familial Meeting Q and A (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)



  • 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


    Order ASG Shirts Here (PDF Form)