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Support Group Tips

Texas Area

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). The non toll free number is 630-350-7539.

AMYLOIDOSIS SUPPORT GROUP MEETING
Contact Person: Liz Will asg04dallas@gmail.com
Muriel muriel@amyloidosissupport.com
toll free 866-404-7539
Date: Saturday, June 7th , 2014
Time: 9:00 am to 3pm – complimentary light breakfast and lunch served
Location: lower level.-near cafeteria – follow signs
Baylor Medical Center, Truett Hospital,
3500 Gaston Ave., Dallas, Texas 75246,
Phone number 214-820-0111 (see below for more detailed instructions)
Comments: Guest: Dr Taimur Sher- Mayo/Jacksonville
Notes on previous meetings: Our guest at Saturday March 8, 2014 was Dr. Janice Wiesman – Boston University


Our guest at last meeting was Dr. Stephen Russell Mayo/Rochester


Saturday June 1ST our guest was Dr. Craig Reeder – Mayo/Phoenix


Saturday March 9th our guest was Taimer Sher – Mayo/Jacksonville


Saturday. NOV 10, 2012 our guest was Dr. Francis Buadi – Mayo/Rochester


Saturday. June 9, 2012 Our Guest was Dr. Joseph Mikhael – Mayo/Phoenix


Our Guest in March was Dr. Shaji Kumar of Mayo/Rochester


Our November 12, 2011 Guests were – Dr. Martha Grogan Mayo/Rochester - and Dr.Brian Berryman Baylor - Dallas and over 35 attendees shared support and love


Our June Guest was – Dr. Marvin Stone


March 12, 2011 Guest – Dr. Gavin Melmed - Baylor –close to 30 people representing many types of amyloidois received support and knowledge..


November 13, 2010 our guest was Dr. Jeffrey Zonder – Karmanos /Detroit ....


June 12th, 2010 our Guest –was Dr. Francis Buadi of Mayo/Rochester and 26 grateful attendees....


Our Saturday March 13, 2010 was Gavin Melmed, M.D


Our November Guest s– Gavin Melmed, M.D and Muriel Finkel Pres. ASG


March meeting: Dr. Francis Buadi – Mayo/Rochester was a big hit as usual, and we all left supported and much educated- …


Our Dec.6th Guests were Muriel and Steve Finkel. Allie did a great job of putting the whole meeting together. We had two new families and we missed those that could not make it. Hope to see you next time.


Our June guest was Dr. Francis Buadi – Mayo/Rochester- and our local LLS rep…… http://www.mayoclinic.org/bio/13986171.html


Our Guest Speaker was – Dr. Craig Reeder – Mayo/Phoenix

For our March 8 meeting- Due to the passing of Maurice Price – see It was a small meeting, but a fruitful one. I (Allie) had attended the service the day before of over 700 people and it was a lovely tribute to our dear Maurice.
http://www.amyloidosissupport.com/in_memoriam.html

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Guest speaker was Muriel Finkel, President Amyloidosis Support Groups.

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Previous meeting was nutritionist and lots of newbie’s.

A woman drove 5 hours from Houston to be there….all received much support and Andreea was great….


Guest speaker for this meeting in her own words:

I was born in Romania and I have been living in the US for the past 13 years. I graduated from University of Oklahoma in 2002. I have been a dietitian for the past 5 years. I have been working at Baylor University Medical Center for past 13 months in the oncology setting. I have recently started graduate school at TWU. My hobbies are running, yoga, and I hope to do a triathlon later on this year. I am currently training for the Tour Des Fleurs, a 12 mile race at the Dallas Arboretum.

I hope this helps. Please let me know if you have any questions.

Thanks,

Andreea

La Donna Stockstill

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Amyloidosis Support Group/Texas Area

Palo Duro Meeting Room in the Truett Hospital/Baylor Medical Center is downstairs and right by the food court. Baylor Hospital is located just east of downtown Dallas. If you are coming from the north on hwy 75 or I-45 it is located just east of downtown and just north of I-30. If you are coming from the west on I-30 it is just east of downtown. If you are coming from the south, going north on I-45, you will see Baylor on your right just as you approach downtown. If you are going north or south on I-35, then turn east on I-30, and you will see Baylor on your left just after downtown. If any one gets lost, the main phone number at Baylor is 214-820-0111.

The Texas Amyloidosis Support Group meets quarterly as a group and focus mainly on Amyloidosis. Invited are patients, caregivers, family members and friends of those who are/were affected by this disease. We felt it is important for each person to tell the story of dealing with Amyloidosis.

Why join a support group? The most important thing is "networking" with each other to find what, where, why and the how about this disease and the treatments we each have experienced. An example of how networking can be so vital is that one of the members found I needed a nephrologist I could trust and depend on and he told me about the one he has been with for several years. If I had not had this experience of meeting Maurice and being able to use his name, I would not have gotten past the appointments desk. Networking does work!

The goal of our group is to support each other, educate ourselves and others, and continue to network with each other to help fill the needs of the members and locate others who need our help.

If you have any questions, please feel free to contact me or Maurice Price, Jr. Mopricejr@aol.com

La Donna


The first meeting of the North Texas Amyloidosis Support Group was held Saturday the 13th of March at the Embassy Suites in Irving, Texas (just minutes away from Dallas/Fort Worth Airport).

Over 20 members attended and included among our group were patients, caregivers, family members and friends of amyloidosis patients. Members came from 12 different cities in Texas and one from Illinois (we immediately made her an honorary Texax). The meeting was conducted like old friends meeting at a home for brunch and visiting and sharing experiences with a disease they all have been touched with and by in one form or another. We had soft drinks and snacks after the brunch and then a beautiful luncheon buffet was presented. It was a first, and in the event that it wasn't perfect, we could at least say we ate well.

Everyone felt comfortable and relaxed as we got to know each other. Each member shared their story and questions and answers passed back and forth. There were tears and laughter shared during the day, as we talked about the journeys we each had taken with this disease.

We remembered the members we had lost who had fought the good fight and we thought of the members who could not be with us that day because of distance and other reasons. E-mails were read from list members from around the world, who had sent us well wishes for the day.

Ribbons with cards, pins and cookbooks were available for the members to take and we want to thank Linda, Donna, and Theresa for making sure we had these. Dennis sent a questionnaire for us to fill out and questions to make us think and these were very helpful. Richard sent pamphlets for everyone to take for themselves and to give to others that explained our disease. These were welcomed and will continue to educate others.

We decided to have quarterly meetings, and Jim said that Baylor Medical Center in Dallas has offered their facilities for our meetings. We made contact with Baylor today, to set up our meeting dates. Our next meeting will be June 12th and we welcome all Amyloidosis members to attend. A member is anyone who has been touched by Amyloidosis and wishes to attend and share. If you are on the talk list and are ever in this area on the day of one of our meetings, you will be welcome to join us.

Everyone left the meeting with a mutual feeling that the day had meant so much to each of us. This list helped many of us to know that we were not alone but the face to face meeting is an indescribable validation of all of our emotional and physical symptoms. The give and take of suggestions and ideas is invaluable.

We encourage others to form similar groups in their areas. Should you want or need any help or guidance; don't hesitate to call on Muriel, Dennis, or me. I will happily contact any others who I think may be of help to you.

La Donna North Texas Amyloidosis Support Group, 15 Mar 2004

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The Texas was a great success! Affirming, encouraging and great fellowship. I want to publically thank Muriel Finkel and Ladonna Stockstill for making it happen. If it were not for people like them, this would be a sad world indeeed. Also, thanks to Richard S. and Dennis K for their contributions.

Blessings to all,

Carol Norton in Texas, 15 Mar 2004

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Dear Mary and others,

Although a good time was had and it was a comfort and helpful to be with each other..........that was not the main goal set or achieved by the meeting....we shared information with people, not on this site, that have this disease...learned much from people who had never shared before......some had other disease along with Amy...........found out that a major University Hospital in the area was willing to help and so much more.........we all promised one another not to repeat too much of what went on at the meeting.....so as not to inhibit the flow of conversation.

We had so much help from Jim Lang and Richard Shapiro and Dennis going into this meeting, as well as so many others that I'm afraid to mention more names, for fear of leaving someone off. Should anyone in the world wishing to start a group such as the Texas Group, remember what La Donna said........we are available to help, and without presuming to speak for Mary and the many others on this list, I am sure that many of you out there would be willing to give their input too. We now know there are many people out there with this disease that do not have access to computers and e-mail.

Muriel, 17th Mar 2004

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The second meeting of the Amyloidosis Support Group Texas/Area was held on June 12th in the Pruitt Hospital in the Baylor Medical Center of Dallas. They provided us with a wonderful meeting room located next to the cafeteria and food court. They provided beverages and an RN as our facilitator for the day. She gave us information on the Cvetko Center and Sammons Cancer Center at Baylor and what they could do for us, as well as asked what more we wanted them to do for our group.

We updated each other about our conditions since the last meeting and welcomed a new member. We discussed being aggressive in our quest for the best medical help available. We had members who made us all feel empowered to follow their lead and to not settle for being "put on hold" but to know this is our life we are dealing with and fighting for.

We had an amyloidosis patient from Virginia whose cousin lives in our area and who came to our first meeting and told us about her cousin who was a victim of this disease. We quickly voted her as the person who had traveled the most miles to be at the meeting. We had lunch and a Q & A session. We told the facilitator what program we wanted for our next meeting (she gave us a listing of suggested programs for the future), she answered our questions and was very helpful with suggestions.

Our next meeting will be September 11, 2004 at 11:00 in the same location. Closer to the time, I will give more information on the program we will have, as well as, other information. If you have any questions, please contact me.

La Donna Texas, 30 Jun 2004

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