There’s also a facebook page and twitter account.

The Motor Neurone Disease (MND) Association is the only national organisation in Northern Ireland, Wales and England dedicated to the support of people with motor neurone disease (MND) and those who care for them. Every year in June the Association promotes Awareness Month with a campaign to spread the word about what is such a devastating disease.

This year the campaign is based around an award winning documentary film, I Am Breathing.

It shows the few months of Neil Platt’s life with MND. Neil passed away in 2009 and let the filmmakers from the Scottish Documentary Institute in his home 24/7. His goal was to leave a message for Oscar his son, then just a few months old and also to spread awareness of MND.

I Am Breathing is being premiered at the Edinburgh Film Festival on Thursday 20 June. A special filming on Global MND Awareness Day takes place at the Belfast Film Festival on Friday 21 June. On the same day and throughout June there will be more than 100 community screenings right around the world reaching thousands of people. Find other screenings here: http://www.iambreathingfilm.com/

Tickets cost £3 for the event ( plus £1 booking fee or you can pay at the door) at the BFF micro cinema at 23 Donegal Street on Friday 21 June4 at 7pm. The film last 70 minutes.

To book tickets see  http://belfastfilmfestival.ticketsolve.com/  or call +44 (0) 28 9024 6609

To read more about Neil and his widow Louise’s commitment to fulfill his legacy through the film read the recent feature in the Telegraph here.

http://www.telegraph.co.uk/health/healthnews/10084600/I-Am-Breathing-film-follows-dying-fathers-last-months.html

Please note that the film is hard-hitting and is not suitable for children. It may also make difficult viewing for people who have had first-hand experience of MND. However, as a tool for those people who know little about MND or perhaps work in associated caring professions it is an valuable insight into how the disease impacts of real life.

Please spread the word about this screening and attend if you can.

There’s a Stormont Long Gallery event on 17 June, from 11 am to 1 pm  which will give an opportunity for families, young people and children to speak to their MLAs about living with Duchenne Muscular Dystrophy.

The event, kindly sponsored by Robin Swann MLA, will raise awareness of the exciting breakthroughs in research for Duchenne Muscular Dystrophy and the need to improve pathways for trials and future treatments in the shortest time-frame possible to save lives and physical function of DMD patients. Action Duchenne is also calling for an increase in coordination of primary, secondary and tertiary services to ensure proper monitoring of the condition, which reduces expensive unplanned admissions and gives families and patients the support they need.

These are all things which apply to many rare conditions, and it would be great if as many of us “Rare Disease” folk as possible can turn up to support the event, and to reinforce the points that although each individual condition is rare, there are a lot of people affected; and that better monitoring, co ordination and planning would improve people’s lives, and save money!

The link for registration is: http://www.actionduchenne.org/NorthernIrelandlobby2013

Do you suffer from Long-Term (Chronic) Pain?

The Patient and Client Council is an independent voice for people in Health and Social Care.  They want to find out about people’s experience of the treatment and care they have received for long-term pain, to ensure that those voices are heard by decision makers in health and social care with a view to developing a pain strategy for Northern Ireland. The PCC will use what people tell them  to produce a report for decision makers that is based on experience. The report will make recommendations for changes and improvements based on what you say.

If you suffer from Long Term (Chronic) Pain and would like to participate, please complete the questionnaire at https://www.surveymonkey.com/s/LongTermPainNI.