'My name is Marcus Ward and I am the Chairperson of the Adult Advocacy Committee. I wanted to be on this committee so I could be a voice for people living with spina bifida and hydrocephalus in Ireland.
There are still many obstacles facing us in 2019, such as the lack of a multidisciplinary clinic, poor wheelchair accessibility and a shortage of personal assistant hours. I hope that as a committee, we can work together and strive to improve some of these issues.'
'My name is Jane Mc Dermott and I hold the role as Vice Chairperson on the Adult Advocacy Committee. I am currently living and working in Dundalk as a Clerical Officer in the Civil Service.
I am really looking forward to working on this committee as I feel it is very important for our members to have a dedicated voice to help them manage the daily obstacles we are all dealing with; education, employment, health care access and many more issues.'
'Anna Shinnors, Secretary. I'm delighted to be on the Advocacy Committee to be a voice for those members of SBHI who may not be able to be a voice for themselves.
I hope the committee will be able to make great strides in improving the lives of people living with spina bifida and hydrocephalus.'
'Dan Riordan, Vice Secretary. I’m delighted to be a part of this group because I want to help others speak up for themselves for the things they need.
On a personal level, I would like to see a change in the way transport is operated for people with disabilities in Ireland because in my opinion, it’s atrocious. Hopefully we will be able to drive positive change.'
'My name is Sean O’Kelly and I am the Public Relations Officer for the Adult Advocacy Committee. I am a disability activist and have been since 2016.
I wanted to get involved with the Spina Bifida Hydrocephalus Ireland (SBHI) advocacy group because I am a firm believer in equality for all, no matter what. In my role as Public Relations Officer, I am confident I can bring my knowledge and contacts within the media to the fore in the hope that we can get our message out there in an effective way.'
'My name is Noeline Ruane and I live in Co. Mayo. I am 50+, so you could say I grew up with SBHI. I have been a branch officer in both Dublin & my local branch Mayo / Roscommon / Leitrim for the best part of 30 years. I work full time and I drive. I am lucky enough to have my own home, close to my family.
I would love to see a multi-disciplinary clinic available to everyone with spina bifida and/ or hydrocephalus. This clinic would have access to consultants in areas such as urology, neurology, orthopaedics, vascular, ageing, and any other areas needed. If such a clinic was available, those coming after us might not have worries. I am looking forward to working with the committee and for the betterment of all SBHI members.'
'My name is Mary Kilgannon. I am a member of the SBHI Kildare Branch and I currently live on my own. Over the years, I have been an officer at local level, and also at committee level. I am a committee member of the newly formed Adult Advocacy Committee.
I wanted to be on this committee to try and help people make changes, so that they can lead the life that they are happy with. I also wanted to do this so that I can further challenge myself. For me, advocacy means standing up for myself and for what I believe in. I want to be able to help people who feel that they don’t have a voice or are not heard or listened to. My hope for the group is that we work well and make positive changes for those living with spina bifida and hydrocephalus.'
'My name is Karen Gibney and I am living with spina bifida. I'm a wheelchair user, I also drive and live independently in an apartment.
I have a lot of life experiences and I'm looking forward to making a change within the advocacy group.'
'My name is Ann Richards and I have spina bifida and hydrocephalus. I am a member of the Dublin Branch and I have served on the committee at various times over the years. I have worked all my life, mainly in banking, and I am now retired. I drive and have my own place.
I joined the Advocacy Committee because I wish to advocate for members whose daily lives are impacted by the lack of services available to them. I am particularly interested in the areas of health and independent living and also the impact of ageing on older members.'