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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


Pacific Northwest - Portland (spring and fall meetings)– Seattle (summer meetings)

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).

SEATTLE/PORTLAND SUPPORT GROUP MEETING
Contact Person:

Contact:
Muriel info@amyloidosissupport.org
Kay Rowley – kcamelot1@yahoo.com
866-404-7539 (Toll-Free)

Date: Saturday August 26th 2017
Time: 8:30 AM -2:30PM
Location: Meetings alternate between Seattle and Portland (next meeting in black)

SEATTLE WASHINGTON:

FRED HUTCH

Thomas Building
Sze Conference Room
1100 Fairview Ave N
Seattle, WA 98109


PORTLAND OREGON:

OHSU
3303 SW Bond Avenue,
Portland 97239.
Center for Health & Healing, 3rd floor, 3070 (Room 4).


Comments: Guest: Morie Gertz MD- Mayo/Rochester , Ed Libby MD, SCAA, Andrew Cowan MD, SCAA etal
Notes on previous meetings: April 29, 2017 Guest: Drs. Shaji Kumar Mayo/Rochester, Emma Scott, OHSU, Stephen Heitner OHSU and Ed Libby SCAA


October 2016 guests were Dr. Wilson Gonsalves Mayo Clinic, Dr. Emma Scott and Stephen Heitner OHSU and Dr. Ed Libby SCAA


July 30, 2016 guests were Drs. Jeff Zonder, Karmanos, and Ed Libby SCAA


In April we met in Portland and were joined by Drs. Prashant Kapoor, Mayo Clinic, Emma Scott, OHSU, Stephen Heitner OHSU and Ed Libby SCAA . We met at
OHSU
3303 SW Bond Avenue, Portland 97239.
Center for Health & Healing, 3rd floor, 3070 (Room 4).


Our fall meeting has as our guest Dr. Joseph Mikhael from the Mayo Clinic, and Dr. Emma Scott from OHSU. Previous meeting was in May in Seattle. See event flyer below for information on previous meeting


EVENT FLYER (PDF) includes location, map, pre-registration instructions and much more information!


Saturday May 2nd our guest was Prashant Kapoor Mayo Rochester along with our binding site rep Anne Sherwood. We had 4 TTR (familial and Wild type) and the rest AL (one localized).


November 1, 2014 our guests were Drs. Janice Wiesman (Neurologist BU) And Emma Scott MD (OHSU)


Saturday Saturday March 22, 2014 our guest was Prashant Kapoor – Mayo/Rochester and local doctors from OHSU and elsewhere


Our guest in November was Jeff Zonder from Karmanos in Detroit


September 7, 2013 our guests were Shaji Kumar Mayo/Rochester, Dr. Ed Libby SCCA, and LLS rep Toni Poppi
We met at Aldersgate United Methodist Church
14230 SE Newport Wy, Bellevue 98006 and all was great.


SAT OCT 13, 2012 our Guests at this very early meeting were Dr.Shaji Kumar Mayo/Rochester, Dr. Emma Scott , Steve Heitner, and Dr. Shernan Holton from OHSU


David Dingli MD PhD – Mayo/Rochester, and our host Dr. Edward Libby - Dr. Pamela Becker and Dr. Bill Bensinger of SCCA/Fred Hutchinson and UW.were our guests at Seattle meeting summer of 2012


SAT. APR. 28 - 2012 our guest were Dr. Nelson Leung Mayo/Rochester and Dr. Chris Yasenchak as well as Emma Scott from OHSU as well as Edward Libby from SCCA. We also had the Binding Site Rep Anne Sherwood and our LLS rep Sue Sumpter – all to help educate and support our close to 50 patients and caregivers from four states


Saturday October 1, 2011 – our guest was Dr. Francis Buadi – Mayo/MN along with Dr. Libby from Seattle and Dr. Yasenchak from Portland.


Our October 2, 2010 meeting had Dr. Jeff Zonder – Karmanos/Detroit and Dr. Farnoush Abar – OHSU and as guests...


March 27. 2010 Our guests was Dr. Craig Reeder Mayo/Phoenix


Sept 26, our group was lucky to have DR. MORIE GERTZ, The WALDENSTROM’S AND MM group that we invited to share with Dr. Gertz during and after lunch with us..........


April 2009: Out of 26 people, we had 12 patients. We put the DVD on the TV/DVD machine & that worked best so all could see. Gayle was great and handled the welcome, sign in, tag all, & invite to eat. Brad put up posters, set out food & cleaned up food, took money for all the stuff we had.

We had 4 new people and many old friends; Dr. Farnoush Abar answered many questions all morning, & lastly told us she is expecting a baby girl mid April. We were fortunate to have her present.


How lucky we were to have Dr. Shaji Kumar of Mayo/Rochester as our guest. So bright, compassionate, caring and willing to really dig in and even worked with us during the breakaway session. The meeting ran from 9 to 3 and we enjoyed every minute of it. Support, Education, Sharing…….and we will all work on that grass roots awareness……

We discussed the new treatments, old treatments and all types of amyloidosis as we had localized, AL and familial in attendance…..all questions were answered…..

We also had dear Sue Sumpter of the LLS……

Next year our meetings are April 4 and September 26 and Kay will be in touch kcamelot1@yahoo.com ……We have Dr. Abar from OHSU coming in April and Dr. Morie Gertz from Mayo/Rochester coming in September. The details will be up on our website www.amyloidosissupport.com soon……

There are some hotels in nearby Beaverton (5-10 minutes away)

Homewood Suites West – has a shuttle to hospital
2. Hilton Garden Inn---
3. Fairfield Inn

We do recommend driving or renting a car from the airport as the fare is about $70.00 by taxi……


In July Our Guests were Dr. Farnoush Abar – OHSU and our LLS REP


Craig Nichols MD was wonderful and we look forward to seeing him again……Dr. Abar dropped by as did the LLS. Craig Nichols MD.
Dr. Nichols' CV (Word Doc)
A 2004 Interview: http://www.acor.org/TCRC/iu.html


The Portland Meeting was great thanks to the attendees, Kay Rowley, our co-facilitator, The Leukemia and Lymphoma Society, Celgene (they donated our food:=) and the wonderful Dr. Francis Buadi of Mayo/Rochester. http://www.mayoclinic.org/hematology-rst/13986171.html

AND

Our LLS rep, also attended briefly to remind us of their benefits. We had a mix of familial, AL and localized and Dr. Buadi fielded all questions and fit in to the group like a glove (not surgical:=)


Previous Guest – Guest-Dr. Craig Reeder – Mayo/Phoenix http://www.mayoclinic.org/hematology-oncology-sct/10010343.html. Dr. Reeder’s presentation was new and cutting edge and is presence so far away from home was welcome. ………we all appreciated your coming for us…… ……Canada, Washington, Oregon, Arizona, and Illinois were represented……


Previous Guests – The Binding Site was educational and so very helpful as they always are.

PORTLAND SUPPORT GROUP MEETING
Contact Person:

Contact:
Muriel muriel@amyloidosissupport.com
Kay Rowley – kcamelot1@yahoo.com
866-404-7539 (Toll-Free)

Date: November 1, 2014
Time: 8:30 AM
Location: TBA
Comments: Guests: Dr. Janice Wiesman (neurologist) – Boston Univ.(Neuropathy expert) - Dr. Emma Scott etal
Notes on previous meetings: Saturday September 6, 2014 our guests at Aldersgate United Methodist Church were Jeff Zonder MD-Karmanos, Dr. Ed Libby from SCCA


Saturday Saturday March 22, 2014 our guest was Prashant Kapoor – Mayo/Rochester and local doctors from OHSU and elsewhere


Our guest in November was Jeff Zonder from Karmanos in Detroit


September 7, 2013 our guests were Shaji Kumar Mayo/Rochester, Dr. Ed Libby SCCA, and LLS rep Toni Poppi
We met at Aldersgate United Methodist Church
14230 SE Newport Wy, Bellevue 98006 and all was great.


SAT OCT 13, 2012 our Guests at this very early meeting were Dr.Shaji Kumar Mayo/Rochester, Dr. Emma Scott , Steve Heitner, and Dr. Shernan Holton from OHSU


David Dingli MD PhD – Mayo/Rochester, and our host Dr. Edward Libby - Dr. Pamela Becker and Dr. Bill Bensinger of SCCA/Fred Hutchinson and UW.were our guests at Seattle meeting summer of 2012


SAT. APR. 28 - 2012 our guest were Dr. Nelson Leung Mayo/Rochester and Dr. Chris Yasenchak as well as Emma Scott from OHSU as well as Edward Libby from SCCA. We also had the Binding Site Rep Anne Sherwood and our LLS rep Sue Sumpter – all to help educate and support our close to 50 patients and caregivers from four states


Saturday October 1, 2011 – our guest was Dr. Francis Buadi – Mayo/MN along with Dr. Libby from Seattle and Dr. Yasenchak from Portland.


Our October 2, 2010 meeting had Dr. Jeff Zonder – Karmanos/Detroit and Dr. Farnoush Abar – OHSU and as guests...


March 27. 2010 Our guests was Dr. Craig Reeder Mayo/Phoenix


Sept 26, our group was lucky to have DR. MORIE GERTZ, The WALDENSTROM’S AND MM group that we invited to share with Dr. Gertz during and after lunch with us..........


April 2009: Out of 26 people, we had 12 patients. We put the DVD on the TV/DVD machine & that worked best so all could see. Gayle was great and handled the welcome, sign in, tag all, & invite to eat. Brad put up posters, set out food & cleaned up food, took money for all the stuff we had.

We had 4 new people and many old friends; Dr. Farnoush Abar answered many questions all morning, & lastly told us she is expecting a baby girl mid April. We were fortunate to have her present.


How lucky we were to have Dr. Shaji Kumar of Mayo/Rochester as our guest. So bright, compassionate, caring and willing to really dig in and even worked with us during the breakaway session. The meeting ran from 9 to 3 and we enjoyed every minute of it. Support, Education, Sharing…….and we will all work on that grass roots awareness……

We discussed the new treatments, old treatments and all types of amyloidosis as we had localized, AL and familial in attendance…..all questions were answered…..

We also had dear Sue Sumpter of the LLS……

Next year our meetings are April 4 and September 26 and Kay will be in touch kcamelot1@yahoo.com ……We have Dr. Abar from OHSU coming in April and Dr. Morie Gertz from Mayo/Rochester coming in September. The details will be up on our website www.amyloidosissupport.com soon……

There are some hotels in nearby Beaverton (5-10 minutes away)

Homewood Suites West – has a shuttle to hospital
2. Hilton Garden Inn---
3. Fairfield Inn

We do recommend driving or renting a car from the airport as the fare is about $70.00 by taxi……


In July Our Guests were Dr. Farnoush Abar – OHSU and our LLS REP


Craig Nichols MD was wonderful and we look forward to seeing him again……Dr. Abar dropped by as did the LLS. Craig Nichols MD.
Dr. Nichols' CV (Word Doc)
A 2004 Interview: http://www.acor.org/TCRC/iu.html


The Portland Meeting was great thanks to the attendees, Kay Rowley, our co-facilitator, The Leukemia and Lymphoma Society, Celgene (they donated our food:=) and the wonderful Dr. Francis Buadi of Mayo/Rochester. http://www.mayoclinic.org/hematology-rst/13986171.html

AND

Our LLS rep, also attended briefly to remind us of their benefits. We had a mix of familial, AL and localized and Dr. Buadi fielded all questions and fit in to the group like a glove (not surgical:=)


Previous Guest – Guest-Dr. Craig Reeder – Mayo/Phoenix http://www.mayoclinic.org/hematology-oncology-sct/10010343.html. Dr. Reeder’s presentation was new and cutting edge and is presence so far away from home was welcome. ………we all appreciated your coming for us…… ……Canada, Washington, Oregon, Arizona, and Illinois were represented……


Previous Guests – The Binding Site was educational and so very helpful as they always are.


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


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