Canberra HSCT for MS Support Group in Canberra, Australian Capital Territory | Medical and health

Canberra HSCT for MS Support Group

Locality: Canberra, Australian Capital Territory

Phone: +61 448 138 381

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24.01.2022 Podcasts and some good articles in this months Intouch magazine. Enjoy

23.01.2022 How cool is this?! You may have seen a few 'bin outing' videos since social isolation kicked off ... but these Hobart residents took it one step further with this music video! Enjoy : Jeremy Sibson

22.01.2022 Interesting read....

21.01.2022 Its great to see people thinking 'outside the box' trying to find new ways of fundraising in COVID safe ways ... https://www.facebook.com/watch/?v=1345721972280058

21.01.2022 Hi all, In my capacity as Vice Chair MS Community Engagement Council (MSCEC) ACT Region and the wider network of other HSCT support groups in Australia, I want to know if the medical community/services can offer the MS HSCT community more support, and how. I'm looking for your ideas and comments that will be added to an Agenda for discussion amongst MS Advocates and MS Community leaders next week. This will then be forwarded to the head of MS Australia. They want to know what they can do for you? Lets get the conversation happening! Become an influencer.

20.01.2022 What a great idea to do during our isolation period. Jump on your treadmill at home or go for regular walks (by yourself or with family/flat mates) during each day in May. It’s some thing we can do to remain positive in these challenging times. I’ll be doing it with my son and husband, how about you?

20.01.2022 Long time overdue. I’ve lobbied my local member (ACT) and federal health Minister, bot to no success. I think Colleen’s partition, takes it to the next level....a good level. I fully endorse this partition. Nicola McMahon (MS and the Military Girl - Canberra HSCT Support group) https://www.facebook.com/659983024/posts/10157859036818025/

19.01.2022 Great news, we all came back negative! Wed Sep 23 2020 03:14:04 NICOLA DOB 21/09/1969 COVID-19 virus was NOT detected on your swab collected 22/09/2020. ACT Pathology. You may still need to isolate. Visit act.gov.au/results

19.01.2022 Upcoming event:ACT MS Symposium - delivered through a series of seminars over a few weeks in probably October, November 2020. They're currently seeking ideas on topics and speakers from various MS communities. So here's your chance, let me know who or what you nominate through this FB page, and I'll forward your requests directly to the organisers. Nominations ill close in approximately 4 weeks time.

19.01.2022 Interesting from Mexico HSCT This is an important topic and I have spoken with Dr. Ruiz about this very subject. Although staying safe from COVID-19 during the entire HSCT treatment process is important, the most critical thing is to prevent / avoid COVID-19 exposure (or any infectious exposure for that matter) especially during the time frame that an HSCT patient is most profoundly immunocompromised (this is when an HSCT patient temporarily has a complete lack of a function...Continue reading

18.01.2022 Interesting news on Progressive MS

18.01.2022 We're excited to launch a series of Online Jigsaw puzzles to keep you busy. Every fortnight we will launch a new puzzle featuring an image from the State Archiv...es Collection. Will your favourite image make the cut? Start your puzzling here > https://www.records.nsw.gov.au//jigsaw-sydney-harbour-brid

18.01.2022 I recently took part in a COVID 19 MS survey, it was trying to capture the MS communities current challenges. It makes for some interesting reading. https://mcusercontent.com//c/COVID_19inMSinitialreport.pdf

16.01.2022 It’s been great doing the May 50km challenge. And I reached my target of $250! To help with ongoing MS research. I’ve also just received an email that I think will be of interest to anyone in this group... take a look:

15.01.2022 This years ACT MS Symposium (run by several faculty's within The Australian National University (ANU) is approaching and they want to hear from YOU - Submit your nomination for guest speakers or what you and or the MS community wants to known more about (research etc/medications or even emerging therapies). If you want to put up a flyer (find the one attached below to be used in your community or workplace). Let's support more understanding around this disease /illness that effects over 25 thousand people in Australia.

15.01.2022 Its Friday - and restrictions are easing just a little bit in the ACT - well done everyone - be careful out there!

15.01.2022 If you want to join in a MS support group online today- a local group here in the ACT is holding their regular meeting online, Details below: Hi Everyone, We will be having our meeting by Zoom today at 12.30. It would be great to see your friendly faces on this freezing day. Here is the link:... Topic: My Meeting Time: Aug 21, 2020 12:30 PM Canberra, Melbourne, Sydney Every 14 days, until Oct 30, 2020, 6 occurrence(s) Join Zoom Meeting https://anu.zoom.us/j/93941882595 Meeting ID: 939 4188 2595 Password: 508507 One tap mobile +61280156011,,93941882595#,,,,0#,,508507# Australia +61370182005,,93941882595#,,,,0#,,508507# Australia Dial by your location +61 2 8015 6011 Australia +61 3 7018 2005 Australia +61 731 853 730 Australia +61 861 193 900 Australia +61 8 7150 1149 Australia Meeting ID: 939 4188 2595 Password: 508507 DAVID ROBERTS ART EXHIBITION OPENS AT BELCONNEN ARTS CENTRE TODAY! I also want to pass on that David Roberts has a solo exhibition showing at the Belconnen Artts Centre. it opens today. David has long been one of the prime movers in the MS Art scene in the Canberra region and has devoted lots of energy to getting art classes going at Gloria McKerrow House. It is really exciting that his exhibition entitled It's Elementary will be showing until 25 October . There will be further information about the exhibition in our local September newlsetter warm regards to all Vanessa Fanning

14.01.2022 https://facebook.com/events/s/covid-19-and-ms-update/554170612203509/?ti=icl

14.01.2022 New treatment news:

13.01.2022 Meeting notice - today Virtual meeting is on today for MS Community’s in ACT We have our usual virtual meeting at 12.30 . All welcome... Hi everyone The combined Taking Control of MS Group and PwMS Group will meet by Zoom at 12.30 using the usual link which is copied below KIND REGARDS Vanessa. Vanessa Fanning is inviting you to a scheduled Zoom meeting. Topic: My Meeting Time: Jul 10, 2020 12:30 PM Canberra, Melbourne, Sydney Every 14 days, until Jul 24, 2020, 2 occurrence(s) Jul 10, 2020 12:30 PM Jul 24, 2020 12:30 PM Please download and import the following iCalendar (.ics) files to your calendar system. Daily: https://anu.zoom.us//tJEtdeChqTgqGNNoihzTBDNZoG57Ptbt/ics Join Zoom Meeting https://anu.zoom.us/j/95029973027 Meeting ID: 950 2997 3027 Password: 008518 Everyone in the ACT region MS Community is invited to suggest topics and or speakers for the ANU Research Symposium to be held on line later this year A range of multiple sclerosis (MS) themed discussions are being planned for this years Symposium and will be delivered over a series of online seminars (proposed for October/November). Organisers are looking for any MS topics relevant to you and/or your local MS community. Forward suggestions on what you want to know more about: (eg covid 19 and MS, what we know about progression in MS, myelin repair, neuro protection, fatigue, exercise and MS research, etc) You are also encouraged to suggest who you want to hear from: (i.e. researchers, medical specialists, inspiring speakers, community members, or health professionals). Please email your suggestions to any of: [email protected] [email protected] or myself [email protected]

13.01.2022 Interesting reading from iconquerMS.....

12.01.2022 Important information for all people with MS and or those who have a loved one with MS.

12.01.2022 Spread the word..

12.01.2022 Hi everyone, Here’s a link to a meeting in the ACT today for a MS support group (non HSCT) which you may want to listen in too - The host is Vanessa: View this email in your browser... Hi everyone, Just a quick reminder that our group will be meeting by Zoom today for a catch up at 12.30. The details for joining the meeting are below Best wishes Vanessa Join Zoom Meeting https://anu.zoom.us/j/95029973027 Meeting ID: 950 2997 3027 Password: 008518 One tap mobile +61861193900,,95029973027#,,#,008518# Australia +61871501149,,95029973027#,,#,008518# Australia Dial by your location +61 861 193 900 Australia +61 8 7150 1149 Australia +61 2 8015 6011 Australia +61 3 7018 2005 Australia +61 731 853 730 Australia Meeting ID: 950 2997 3027 Password: 008518 Find your local number: https://anu.zoom.us/u/aqBx1rJfb Join by SIP [email protected] [email protected] Join by H.323 113.197.7.76 113.197.7.77 Meeting ID: 950 2997 3027 Password: 008518

11.01.2022 Here is a great table to help people figure out their ‘risk’ profile, depending upon what treatment you may be currently taking for your MS (including HSCT).

11.01.2022 Nice to get a message like this, can’t remember the last??

11.01.2022 Here’s a good article to read...

11.01.2022 Have your say... Here is a good opportunity to be able to say how the COVID-19 situation is affecting you. For once it's not a survey with just tick-a-box questions which never seem to have suitable options for your own circumstances - there are free text questions as well. PwMS (or any people with disabilities for that matter) often don't get a chance to say how things affect them so take this opportunity to throw your two-bob's worth into the melting pot. https://www.monash.edu//living-with-covid-19-restrictions-

10.01.2022 Now this kind of study is worth reading;https://multiple-sclerosis-research.org/2021/01/hsct-time/

09.01.2022 Current message from Russia re HSCT....

07.01.2022 Thanks Dave this is a good one.....

04.01.2022 HSCT International news Ebmt Auto immunne diseases working party meeting (AIDWP) in Berlin This year (due to covid -19 ) the meeting its virtual (on-line),and as always its free for everybody ... Only thing you have to do is register ,so i would like to ask everybody to register for this wonderfull event ,together we make the hsct community stronger...Thanks ...Luis https://www.ebmt.org/events/adwp-educational-virtual-meeting

03.01.2022 Latest news from the National MS Society (international)

03.01.2022 I love a good bit of research into something new ‘MS and Apple peel’ really!!!

01.01.2022 If you missed this presentation by St Vincents in Sydney on HSCT trials see it again here. Would love your feedback on it.

01.01.2022 If you ever find yourself in this position-read on...