Support the Call for Investment in Neurorehabilitation in the Upcoming Budget

The "We Need Our Heads Examined" campaign for action on neurorehabilitation is contacting elected representatives in the lead up to the Budget, calling for investment in neurorehabilitation services as a priority.

The campaign, which is supported by 17 organisations representing people with neurological conditions, is calling for €7m investment in 2018 to begin to address the huge unmet need for neurorehabilitation services.

    

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Update – SBHI Parents’ Advocacy Committee

6th September 2017

Earlier in the year I was asked to meet with a group of parents who have children with Spina Bifida and/or Hydrocephalus. We met and discussed a few key issues including: care for children in relevant children’s hospitals; issues around scoliosis care; and, what could be done to achieve real change in these areas.

The meeting was intense and the detail which emerged was very complex. It was clear that any progress on these issues would require a sustained and targeted response, delivered with patience and a strategic focus.

In order to make real progress on this, it was suggested that a core group come together to narrow the focus of advocacy work so that a plan with achievable aims could be established and pursued.

On 5th September 2017 I met with this group and it was agreed that the Parents’ Advocacy Committee would work with the CEO, relevant staff/Board members, affected parents/carers, and all other relevant stakeholders, initially around three main areas:

  • Clarification regarding the current and future plans for the paediatric Spina Bifida clinics in Ireland
  • A vast improvement for the care of children who have both Spina Bifida and scoliosis
  • A commitment for better education to be provided for obstetricians regarding a prognosis of Spina Bifida and/or Hydrocephalus in a developing child

A plan will now be established by the committee so that the appropriate actions can be taken and reflected upon. The responses we receive will be shared by the committee so that all those affected are kept up to date.

This is very much a collaborative process, driven by a group which is intent on realising real change. If you would like to get involved with or contribute towards the work of the Parents’ Advocacy Committee, please contact Amanda Coughlin at:

Email: amandacoughlan@live.ie

Phone: 085 143 4953

Facebook: https://www.facebook.com/amanda.coughlan.12


1 down, 99 to go!

A Kerry based gym instructor’s ambitious target of raising €100,000 for people in Ireland who live with Spina Bifida and/or Hydrocephalus has now reached the €1,000 mark.

Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!

Shane Finn is set to run 24 marathons in 24 days this summer and SBHI is supporting him all the way.

 

 

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SHINE volunteer raises €1300 for 'Sunflower Week'

Dundalk woman Jane McDermott organised a table quiz in her local pub, Kennedy’s Bar last Friday night (17th April) to raise funds for Spina Bifida Hydrocephalus Ireland’s (SBHI) summer respite programme which she has volunteered on for the past five years.

Having set herself a fundraising target of €1,000, Jane, from the Carrick Road in Dundalk, was overwhelmed with the support she received from her local community in exceeding her goal by raising a total of €1,300.

 

 

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Our Beautiful Minds: National Brain Awareness Week Launch Event

A public information evening - 'Our Beautiful Minds: Our brains and how they shape our lives' - is the launch event for National Brain Awareness Week, March 6th to 12th 2017.

Our lives are shaped by our brains and how they are impacted by challenging events, illnesses and injury and everyday experiences.

This launch event for National Brain Week will be an evening of personal testimony, emerging research and clinical perspectives on the brain and neurological conditions.

 

 

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Derval O'Rourke jumps in to support 24 Marathons, 24 Days

Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!

Shane is set to run 24 marathons in 24 days to raise €100,000 for SBHI: 24-year-old Shane will set off from Donegal on 22nd June and make his way through 24 counties as he covers a marathon a day for 24 days, ending in his home town of Dingle on Sunday, 15th July.

In training for this extraordinary challenge over the last number of months, Shane’s 24 marathon campaign has attracted support from one of Ireland’s most successful track and field athletes, Derval O’Rourke.

The three time Olympian and World 60m Hurdles Champion officially launched ‘24 Marathons, 24 Days’ in the UCC Sports Mardyke Sports arena in her native Cork at noon on Friday, 20th January.

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NAI Events for National Brain Awareness Week 2017

Registration is now open for Neurological Alliance of Ireland (NAI) events for National Brain Awareness Week 2017, taking place from 6th to 12th March.

National Brain Awareness Week takes place each March to raise awareness of the impact of living with a neurological condition.

You can now register for events organised by the Neurological Alliance of Ireland, the national umbrella representing over thirty organisations working with people with neurological conditions and their families.

 To find out more visit http://www.nai.ie/go/brain_awareness_week/news/14-12-2016-check-out-nai-events-for-brain-awareness-week-2017

    

   

 

 

 

   

   

    With warm thanks for your support

    Mags

   


Make Dublin City Accessible to all

Lord Mayor of Dublin, Brendan Carr is launching an initiative to help improve access in and around the City and he needs people who feel that access in Dublin city is an issue to get involved.

People with disabilities who live, work, study or socialise in the city are invited to attend a workshop in the Mansion House on Friday, 27th January.

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Governments urged to intensify efforts to end discrimination

On this International Day of Persons with Disabilities (Saturday, 3rd December) UN Secretary-General, Ban Ki-moon is urging “national and local governments, businesses and all actors in society to intensify efforts to end discrimination”.

The UN Secretary-General is also calling on governments to remove the environmental and attitudinal obstacles that prevent persons with disabilities from enjoying their civil, political, economic, social and cultural rights.  

 

 

 

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#SELFTREE - SBHI's Christmas Campaign 2016

What is a #SELFTREE?

A #SELFTREE is a selfie picture of you and your Christmas tree!

How do I take a #SELFTREE?

Just like a selfie! All you need is a photo of you and your tree taken on your camera or smartphone!

How do I use my #SELFTREE?

You post your #SELFTREE picture to Facebook with the hashtag #selftree

If you also want to donate to SBHI this Christmas, you can simply text SBHI to 50300 

Is there a prize?

YES! The best #SELFTREE posted online between now and 25.12.2016 will received a brand new smartphone!

 

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