Saturday May 20th 2017 Dr. Mark Sloan -Boston Univ. Amyloid Clinic and Prothena (NEOD001) Rep
August 13, 2016 Our Guest was Dr. Martha Lacy/ Mayo Clinic.
Our Guest April 23, 2016 was Dr. Mark Sloan -Boston Univ. Amyloid Clinic
We had several guests at this first Denver meeting of 2016. Our guest doctor from Boston University's famous Amyloidosis Clinic,
Dr. Mark Sloan was generous beyond
words. He took the time to explain and answer all questions put to him..even if it was an I don't know answer.
Dr. Sloan went through all the alkylators, including the bendamustine, along with the Imids and Proteasome Inhibitors (Velcade, Ninlaro, Kyprolis). We heard the pluses and minuses of all along with good old dex. We also went over the new antibodies NEOD001, 11-1F4 from Columbia, and the anti SAP treatment from the
UK and GSK . We were joined by Colin Oliver from Prothena .
After the break we went over the TTR treatments and were joined by Alnylam's Lori Apple, and Ionis' Steve Hughes.
Our Guest August 8,2015, was our annual favorite, Dr. Jeff Zonder
Our Guest April 25th was Dr. Martha Lacy- Mayo/Rochester
There were over 35 patients and caregivers from all over
Eastern Colorado and one from Utah.
Most were AL with the exception of one TTR(wild type) and one non TTR familial (Claire -ApoA1).
We went through all current trials including the new Antibody.
The trials can be seen on our website. Click the following link.
TRIALS CLICK HERE.
We went through all of the biomarkers on the biomarker sheet and Dr. Lacy explained each one.
CLICK HERE FOR BIOMARKER SHEET
We heard from our newbies and veterans and there was lots of public
Q and A and private sessions with the doctor during break and lunch.
Before lunch we heard from Lori Apple our LLS rep and Michaely Rosas from.
Action for Amyloidosis
August 9, 2014 Our guest was Dr. Jeffrey Zonder of the Karmanos Cancer Institute in Detroit,
Our April 5th guest was Dr. Janice Wiesman – BU- Neurologist- Peripheral
Amyloid Neuropathy – The Basics – In part one of a two-part series, Dr. Janice Wiesman discusses the causes, common symptoms, examination findings, and tests that diagnose amyloid neuropathy.
Amyloid Neuropathy – Treatment – In part two of a two-part series, Dr. Janice Wiesman provides an overview of current and future treatments for amyloid neuropathy.
August 10, 2013 our guest was Dr. Jeff Zonder – Karmanos/ Detroit
April 2013 Meeting had over 40 patients and our LLS rep and Dr. Heather Landau MD by phone, Morie Gertz MD via email and Muriel Finkel in person
SAT AUG. 25 , 2012 Our guest was Dr. Jeffrey Zonder – Karmanos/Detroit
SAT. MAR 31- 2012 August 14, 2010, our guest was
Dr. Joseph Mikhael – Mayo/Phoenix
August 14, 2010 and August 20 2011 - Our guest was Dr. Jeff Zonder Karmanos/Detroit
May 22 2010, our guest were Dr. Martha Lacy – Mayo/Rochester MN and Dr.Lynn Callaway our LLS rep
GUESTS AT AUG.22, 2009 MEETING:
Dr. Jeffrey Zonder Karmanos/Detroit, Dr. Sherwood (The Binding Site) and Dr.Lynn Callaway our LLS rep all did a wonderful job, and the audience participation was excellent. Lynn handed out the new forms for medical pay assistance.
Our Mother’s Day Weekend Guest was DR. MARTHA LACY MAYO/ROCHESTER ...Our LLS Rep Lynn came by and gave us lots of new information.
Our August Guests – Dr. Jeffrey Zonder, Dr.Jeff Matous and our and LLS rep
Guests for May, 2008 were Dr. Jeff Matous, and our LLS rep
Our guest Dr. Jeff Matous from Pres St. Luke’s was terrific as usual. We were given a new room on the Penthouse floor with a panoramic view of part of the city… (Pike’s Peak was blocked by another building but we adjusted :=) We meet at Pres. St. Luke’s. part of the Rocky Mountain Cancer Center and Dr. Matous and his colleague Dr. Brunvand (sp?) probably see the most amyloidosis patients in Denver… (AL)…of course we all encourage the newbie’s to get that second opinion at a “Center” and Dr. Matous is fully behind us on that….he works with the doctors at the centers and that is so great to hear…..a doctor without a G-d complex….refreshing…..and more knowledgeable than most too..
We had a great catered breakfast and lunch and even with several missing we had over 20 including 3 sets of newbie’s (one familial)…which brings our group two three familial families and two localized as well as the AL’s and AL’S and MM’s…
We had a newbie fly in from Salt Lake City and we had quite an interesting mix of people…all sharing their stories and feedback from the group and the doctor and of course a great break away session after lunch leaving the patients to share on their own while the rest of us went to our corner:=)
Dr. Lacy from Mayo was wonderful and we hope to have her back again soon.
Our guest speaker, in January was the Binding Site’s Tina Reichel and Dr. Jeff Matous was nice enough to come and stay with us for the meeting and was a great help.. He even took part in the break away session...
Our guest speaker, in August, Dr. Morie Gertz of the Mayo Clinic Rochester MN was wonderful. Dr. Gertz has been an advocate of peer group support meetings since their inception, and even wrote something for our web site www.amyloidosissupport.com . He is one of our valued medical advisors for the ASG.
Includes Colorado, Montana, Wyoming, and Utah.