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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


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).

Contact Person: Muriel info@AmyloidosisSupport.com
Tel: 847-350-7540
866-404-7539 (Toll-Free)
Date: Saturday May 18th, 2019
Time: 8:30 to 2:30pm (flexible ending time.)
Location: New building connected to the Huntsman, “The Primary Children’s and Families’ Cancer Research Center”. Patients can park directly outside the doors

Huntsman Cancer Institute
1950 Circle of Hope
Salt Lake City, Utah 84112
Official Flyer Here (pdf)

Connected to the existing research facility via two skybridges, the new 220,000 square-foot space is designed to accelerate research in childhood and hereditary cancers. In this building, researchers
Comments: GUESTS: Giovanni Palladini MD from Pavia Italy joins our local doctors Jose Nativi ( cardiologist), Tibor Kovacsovics(hematologist), Jo Abrams (nephrologist) and Kelsey Juster-Switlyk (neurologist) etal
Notes on previous meetings: SATURDAY May 19th our GUESTS: Drs. Janice Wiesman (neurologist), Jose Nativi ( cardiologist), Tibor Kovacsovics(hematologist), Jo Abrams (nephrologist) and Kelsey Juster-Switlyk (neurologist) etal

Saturday June 10th 2017 our guests were Drs. Martha Grogan (Cardiologist) Mayo Clinic, Jose Nativi, Tibor Kovacsovics, Jo Abraham etal

May 14, 2016, we met for our second meeting at Huntsman. Guests were Nelson Leung MD from the Mayo Clinic, Drs. From Huntsman, Jose Nativi MD, Tibor Kovacsovics MD etal. Close to 100 came to this beautiful venue to learn and empower. We had a full agenda but managed to squeeze it all in.

We had presentations from the who's who of amyloidosis and Celestial Reimers topped off the day with an update to her nutrition presentation of last year.

We started the day with the Amyloidosis Awareness Video that can be seen without adds on www.AmyloidAware.com along with the companion booklet.

During the break and lunch our doctors gave their time for a one on one with the patients. Your evaluation sheets told us how much that was appreciated. Next meeting be sure and have your forms filled out. We have a special form for our AL patients. It will help our doctors when answering your questions.

Speaking of food we had a lovely spread donated by our host doctors and hospital served in The Point Restaurant with awe inspiring views of the local vista. The meeting itself took place in an auditorium fit for royalty with its own majestic view.

We heard from our clinical trial reps and with the full agenda had to save our patient introductions until the end (next meeting we will do them earlier in the meeting for sure).

A big thank you to all who came to this meeting (next one in spring of 2017 and hopefully two a year after that). Of course a big thank you to our special guest Dr. Nelson Leung of Mayo Clinic Rochester Minnesota. He stayed for the entire meeting and besides the one on ones during break and lunch he held a mini meeting for our ALECT2 patients.

Our other doctors who contributed so much to the meeting(and helped plan the entire event) were:

Tibor Kovacsovics our wonderful hematologist, Jose Nativi-Nicolau our passionate, caring cardiologist, and Kelsey Juster-Switlyk our young and rising star neurologist. Jo Abraham,our resident nephrologist, had two meetings in NYC and Chicago and did not return until Saturday evening. She expressed her regrets and promised to return to our meeting next year. The cooperation among our SLC doctors is something we see at very few other centers (Mayo and Boston U. come to mind as good examples of this type of collegiality) and ourSLC patients can only benefit from this. We should see it everywhere, but sadly we don't.

An enormous thank you to Annie Huff and Nico Cheek-O'Donnell and their helpers as well.

Salt Lake City is so lucky to have this team treating our amyloidosis patients. Knowledge is power and we hope you will think of the ASG as a member of the team as well. Til next time....adieu...

Over 50 patients and caregivers joined Drs. Zonder, Nativi, Abraham and Kovacsovics at our first Amyloidosis Support Meeting in Salt Lake City. TTR clinical trial reps as well

It was so well received. Huntsman gave us a wonderful room and a nutritionist and the LLS treated us to breakfast, while our hosts treated us to lunch. We all can’t wait until next year

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We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.

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