TTR & Familial
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Were you diagnosed with Cerebral Amyloid Angiopathy (CAA)?
Support Group Tips
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.
There has been a great deal of chatter about starting Amyloidosis Support Groups on the talk list. I have been asked to share some of the things done in preparation of the (Texas) meeting, during the meeting and since the meeting.
First post "feelers" to the list about forming a group in your area. It is a good idea to title your group with Amyloidosis as the first word. Such as Amyloidosis Support Group/.(fill in your area)................ See if there is an interest in forming the group. Keep all the e-mails you receive for future reference. Create a file to move them into so the do not fill up your mailbox. Print e-mails of support from list members who contact you but because of distance or other matters are unable to attend. Share these with the members attending the meeting.
Have handouts for members to take home so they can share these with other Amyloidosis patients, doctors, hospitals, etc. in their area. Have a supply of ribbons, pins, cards and cookbooks available for members to take home. Some will donate money for these and this can be sent onto the proper places. Have the members fill out the questionnaire authored by Dennis. I have kept these in a file and hope to make them available in the future for doctors and hospitals in our area who are interested in increasing their support and treatment of Amyloidosis patients. Have the members bring them the day of the meeting, e-mail them to you or send them through regular mail.
Start a designated file for your group. There should be one person who is the contact person of the group and this person needs to have all the information on the members (that the members want to share) so that each group member is kept in the loop. I contacted the members several times before the meeting with information they needed. Then I contacted them with a follow-up after the meeting. They want to be kept abreast of what is taking place but not have their mailbox loaded with unnecessary e-mails. As time draws closer to our June meeting, I will again contact each of them with the necessary information. They already know the place, date and time but I will remind them. I will also post an invitation to members of the talk list encouraging them to join us for our meetings.
Your first meeting may not be where you will meet later. When we first met, I did not know if we would meet again or if we did, where that meeting would take place. The members chose to meet quarterly and one gentleman who attended had talked to Baylor University Medical Center, if we could meet there, if the group chose to do so. They graciously said yes and we have since that time made all the necessary arrangements for our meetings. They publish a newsletter and invited me to send in an article about Amyloidosis and about our meetings, I have done this and hope it will reach more people who need to contact us. Here again, I am the contact person for this newsletter. The wonderful thing about having our meetings at Baylor is that they will take care of all our needs including: meeting room, soft drinks, parking, speakers, an RN available that day to assist us with anything we may need, etc. Their cafeteria and food court are just steps away from where we will be meeting. They will help us "get the word out about our group." They do this all the time and it is wonderful to have them taking an interest us.
These are a few things too think about when you decide to form a group. Muriel can give you the particulars about the comforts of the first meeting. I am sure there are other things I should tell you but this has been a tiring day and my mind is starting to "flat-line." Feel free to contact me with any questions and I will be more than happy to assist anyone in anyway.
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