AA and MDS International Foundation

Please post any useful / relevant links here for possible inclusion on the main website

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chris
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Re: AA and MDS International Foundation

Post by chris » 21 Aug 2013 10:23

Hi Bobby

Success! Your original note was very clear. It was my mistake for going maverick and trying to be clever by clicking on the Sign Up for Upcoming webinars link - though don't know why it's not there as that would seem to be a logical link!? Probably because the webinars are different from the live web broadcasts. This is a live presentation from the Boston MDS Forum so as well as the presentation we will probably get to hear the questions from the participants present.

Anybody else trying to sign up,do follow Bobby's exact instructions!!!

Many thanks for drawing this to our attention, Bobby. I usually get e-mails re upcoming webinars but have not received anything about this yet. It should be an interesting listen - though of course, standard treatments in the USA are not always easily available here.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Bobby Shaw
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Re: AA and MDS International Foundation

Post by Bobby Shaw » 21 Aug 2013 15:24

Pleased you were able to register for the Sept 7 event, Chris. I did get an email announcement for the event from AAMDSIF on Aug 13, so you might want to check back with them. Did you get an announcement yesterday for tomorrow's webinar on Nutrition in Bone Marrow Failure Disease?

Best wishes, Bobby
janetstanford
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Re: AA and MDS International Foundation

Post by janetstanford » 21 Aug 2013 21:02

HI Bobby
Interesting would it be possible if you could post the infio on tomorrows subject Bone Morrow Failure DIET ect on this site as i find this interesting and i have just read a post by Molly about diet and left a post for her and red ....sure they would want to read this or you could ask Chris you are all so good at that and clever me no useless at it know the basics and nobody ti train me

take care enjoy the webinar Janet :)
Bobby Shaw
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Re: AA and MDS International Foundation

Post by Bobby Shaw » 22 Aug 2013 09:53

Dear Janet,

I share your frustration with computers. But I am lucky to have a wife who understands the wretched things and enjoys experimenting with the programmes.

If you are interested in tonights' webinar on nutrition and bone marrow failure diseases, I will try to set out the steps you would need to listen:

1: Click on the link that Chris mentions in her post yesterday to Molly. This will take you straight to the page on Upcoming Webinars on the AAMDS website.

2: The second webinar mentioned on that page is the one we want to hear tonight. You can click on a brief description of the session. If you want to listen, you will need to click on the Sign Up box. Then, you need to give them your email address and a password.

3: You will then get a confirming email from AAMDS. This is rather frightening as it contains lots of stuff about technical requirements. But you can ignore most of this. The really important bit is listed Under "Day of Event - Attending". These instructions are fairly easy to follow, and it is worth logging in about 5 minutes before the scheduled start of the webinar (which is 8pm tonight for this one). You wil also need to have the sound switched on in your computer.

I do hope you managed to get hooked up to this webinar. If you miss it, AAMDS posts webinars on its website a few weeks after the live version. So you can then listen to them at your leisure. To do this, you need to go to the main AAMDS website and click on the "Archived Webinars" box on the left hand side of the main page. Then follow the instructions, which are not too complicated.

Good luck, and all good wishes,
Bobby
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: AA and MDS International Foundation

Post by chris » 22 Aug 2013 10:57

Hi Bobby and Janet and all

Hope, Janet, with Bobby's very clear instructions, you are all able to get to listen to this webinar tonight and register for others ( yes, I did get a reminder about this one Bobby but cannot find the one re Sept 7th - may have deleted it thinking it was an invitation to attend as not likely to fly to Boston for the privilege!!). I will definitely try to listen to this one tonight. Not sure how easy it would be to post a summary, Janet, these things go on for over an hour and cover a lot of ground but, as Bobby says, if you don't catch it tonight you will be able to access it quite soon in the archived webinars.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: AA and MDS International Foundation

Post by janetstanford » 23 Aug 2013 11:05

Hi Bobby and Chris
Sorry just read your messages Now did not sign in again yesterday as sleep issues caused by going back on steroids :? brain not in gear at all....but thanks for all the help and the techo speak maybe when i am off the steroids mind having said that i have a 20 and 18 year old in the house who use a computer like i use an oven (hint hint ) if only they did not have such a busy life :shock: sure you have all been there :lol:

i shall try to get back to this soooon
Thanks again Janet
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