A very big hello to you!
I am writing to you as the newly elected Chair of SMA Ireland.
SMA Ireland was formally established last year as the collective voice of people here with Spinal Muscular Atrophy. We will support the SMA community by raising awareness of SMA and advocating for access to treatment.
The success of SMA Ireland relies on your participation - and by you I mean people with SMA, their family and friends, the wider rare disease community together with disability advocacy groups. We are all in this together!
Over the past number of months I, along with the other voluntary directors Emmeline Hill, Jonathan O’Grady and Paul O’Malley, have been busy working behind the scenes on a number of important initiatives. More about that in due course. With that background work out of the way, it's now time to kick things up a gear and make sure that SMA Ireland truly serves you!
SMA Ireland Survey
Expect to hear more from us in the weeks ahead - beginning with a survey of the wider SMA community seeking feedback regarding the objectives of the organisation.
Following this, everyone is invited to join the directors of SMA Ireland for our inaugural Annual General Meeting. This will be held via Zoom on Saturday 16th January 2021 at 2:30 PM.
Details will follow, however if there are any specific questions or topics you would like to see on the agenda please email info@smaireland.com.
We look forward to hearing from you, and with your help forging a dynamic, cooperative and progressive organisation.
SMA Ireland - Together We Are Stronger.
Yours faithfully,
Karen Mannion
Chair, SMA Ireland
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