As a lot of the visitors to My Way Access will know that the disability I have is called Mucopolysaccharide Morquio. Since it is a rare disease, there are very few times I get to talk to people with the same disability, to share our stories with each other and find out what each other’s experiences are.
That is why I belong to two different organisations / charities – The Irish MPS Society and The MPS Society UK.
Last week, The Irish MPS Society celebrated its 20th anniversary with an All-Ireland conference in the plush surroundings of The Clarion Hotel Dublin Liffey Valley.
Costel Focsa spoke about his 9-year-old daughter Cezy and about her experiences on using Vimizim on the trail in Ireland. We also learnt that Cezy was the official flag bearer for the Kilkenny Hurling team on All-Ireland Final Day in Croke Park. What an amazing experience she had and I must admit, I was very jealous!
Graham Coates from Biomarin was also speaking at the conference, talking about the availability of Vimizim in both Ireland and the UK. It was interesting to hear about the mechanics to try and this drug available on the market.
Mo Kelly gave a good talk about her two sons on home infusions for MPS I. It is remarkable the differences that getting the infusions at home makes to a families live, instead of making the long weekly journey to the hospital.
Other speakers on the day were:
- Martin Lynch – Chairperson
- Suju Somnadhan – Temple Street Hospital PhD candidate
Overview of MPS Diseases - Dr Fiona Stewart – Belfast CIty Hospital
Mucolipidosis and the Rarest of the Rare
Long Term ERT - Professor Eileen Treacy – Mater Hospital
National Rare Diseases Plan - Dr. Gilsela Wilcox – Salford Royal NHS Foundation Trust
Transition to Adult Clinics - Dr. Claire O’Leary – Manchester University
Genistein Trial
Gene Therapy - Julie Whann – Occupational Therapist
Sensory Dimensions of Care - Alison Wilson – All Ireland Advocacy Support Officer for MPS
Advocacy - Dr. Conor Hearty – Mater Hospital
Pain Management
The whole weekend was a very rewarding experience and I would encourage others who have a disability to join such charities as these. The craic we had was good and we shared stories about the antics we get up to. The Assistant Secretary Elena McGauran had even heard about my sorry story of falling on my backside the week before, trying to impress a girl. We had, or rather Elena had, a good laugh about that….