SMA Ireland was delighted to host its inaugural Annual Meeting on Saturday 16 January 2021, via teleconference.
The meeting was extremely well attended and included adults with SMA, the families of children with the condition together with representatives from the pharmaceutical sector and international SMA advocacy groups.
Karen Mannion, chair of SMA Ireland, set out the many achievements of the organisation over the past year or so. These included:
- Formally establishing SMA Ireland and applying for charitable status
- Raising start-up funds of more than €6000 through the #raweggchallenge
- Lodging a patient submission with the Irish health authorities regarding reimbursement for the Novartis drug, Zolgensma
- Representing the Irish SMA community at meetings with the key SMA pharmaceutical companies, including Novartis and Roche
SMA Ireland Director, Jonathan O'Grady, distilled the results of the recent survey of SMA patients, families and connected parties in Ireland. 58 people replied to the survey with broad representation by age and location. A key question concerned thoughts regarding the priorities of SMA Ireland. Respondents were asked to rank the following ambitions:
- Family support by providing information and a network of connections
- Raise awareness of SMA and campaign for the disease screening checklist in Ireland
- Serve as a liaison between pharmaceutical company and patients groups
- Improve the overall standard of care for people living with SMA
Priorities here varied according to cohort. For adults with SMA, liaising with the pharmaceutical companies was top priority. However, for parents and caregivers of children with SMA, improving the overall standard of care was of most concern. While Newborn Screening of SMA was a concern for all, it was more of a priority for medical professionals and people not directly living with the disease.
Jonathan said that SMA Ireland needed to bear in mind that different cohorts had different priorities and that we must remember this as we map out a future direction for the organisation.
Karen Mannion discussed what SMA Ireland should stand for, and concluded by introducing a proposed mission statement:
"Supporting those lives affected by Spinal Muscular Atrophy in Ireland by sharing knowledge, raising awareness and accessing treatment until a cure is found."
Karen explained that this mission could evolve as the organisation matured, but that it gave a good indication of intent at this early stage.
Karen then raised a motion that SMA Ireland would introduce an annual membership fee of €25. Paid-up members would be entitled to vote at future meetings, and in particular elect officers of SMA Ireland. This was seconded by Professor Emmeline Hill and then put to a general vote where it received unanimous support.
Karen Mannion concluded the meeting by setting out the six broad objectives of SMA Ireland, namely:
- Support families by providing information and a network of contacts
- Raise awareness and campaign for screening
- Lobby Government and the Health Service for access to treatment
- Serve as a liaison between pharmaceutical companies and patients
- Support ongoing research and coordinate patient volunteers
- Initiate and maintain connections with international SMA organisations