News

New paper from the International Progressive MS Alliance - Charting a globlal research strategy for progressive MS – An International Progressive MS Alliance proposal.

Recently, the Multiple Sclerosis Journal published a paper by the International Progressive MS Alliance. The paper, “Charting a globlal research strategy for progressive MS – An International Progressive MS Alliance proposal’ is a strategy to find better ways to care for people with progressive forms of multiple sclerosis (MS).

MS Ireland was delighted to see MS well represented at the Future Neuro Patient Public Involvement (PPI) event last week.  

MS Ireland in partnership with Novartis Ireland are calling on artists around the country to take part in an exhibition celebrating World MS Day in May 2022.

Artists living with Multiple Sclerosis or their collaborators are invited to submit works of art to be featured in an exhibition by MS Ireland in partnership with Novartis Ireland. Understanding life with MS can be challenging for some people as it can be difficult to fully understand the impact of some of the experiences by those living with MS.

Dear Friends,

At the beginning of the COVID-19 pandemic, MS Ireland had to adapt some of the projects that we normally work on. The pandemic had an impact on our ability to carry out various fundraising activities and this resulted in a decision to scale back some of the projects we normally work on to ensure the sustainability of our organisation. One of those projects was MS News. We decided to share MS News in digital format only, in 2020 but are happy to be returning to physical print as we know that some of you may not have access to the internet.

MS News uses considerable resources in terms of creating, printing and posting. We are currently reviewing this part of our work and assessing its relevance to our community. We would love to hear from you on this. On page 35 you will find a short survey which we would greatly appreciate you completing and returning to us. Alternatively, you can email your feedback or suggestions to the editor, Aoife Kirwan – aoifek@ms-society.ie.

For the second part in our look back series , this week we are looking back on the MS and Me blog posts from July to December 2021.

As the year draws to an end, we are looking back over some of the blogs written by MS and Me bloggers during 2021.

We’d like to say thank you to everyone who reads and shares the blog posts and to those of you who send messages and write comments.

Writing a blog piece can be a challenge; sometimes it is difficult to share our experiences. We hope that our words are relatable to other people with MS. We also hope we help people without MS understand more about the condition and that we give a snapshot of what life with MS is like in Ireland. 

December 10th is the annual Christmas Jumper Day for MS Ireland. The past two years have been hard for all of us living with the pandemic. As the world shut down in 2020, it was such a surreal experience for everyone. Thankfully this year the world has somewhat reopened. Hopefully next year we can say Covid is a thing of the past. With everything moving online due to social distancing, so many charities have lost out on fundraising.

MS Ireland were delighted to launch MS Explored - The Podcast back in September. As we begin planning for Season 2 we are keen to hear from our listeners and use this feedback to help inform our plans for future episodes. We are inviting our listeners to provide their feedback in a short 3 minute survey. The survey can be found here: 

https://www.surveymonkey.com/r/WPQ3PHZ

Accessing information is as simple as typing a question into Google and hitting ‘search’. However, not all of the results that are returned are reliable. The difficulty can be finding information that is current and correct. 

There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.