Latest News

Registered with The Charity Commission for Northern Ireland NIC100528.

  Helpline 078 26 004 005

E-mail: saca.info@yahoo.co.uk

On our new Fundraising Page – find out how to Donate to                     SACA and read about Pamela’s recent fundraiser!

 

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COMPETITION TIME

 

Design a SACA pin/badge

 

Closing date extended

A gift card for

Toys r Us or Amazon for the winner!!

Entries o-pin to all: e-mail your entries to

 saca.info@yahoo.co.uk with your name

and address by 26/11/16 – 23.59

 

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  •                           Annual General Meeting Notice

                        Saturday 15th October 12 noon to 3.00pm

Venue: Bowling Pavillion, Musgrave Park, Stockman’s Lane, Belfast 

Programme:

12.00               Registration with refreshments

12.30               Guest Speaker: Mr Roy McConnell, Consultant Neurosurgeon, RVH

Chiari malformation and tonsillar ectopia, 

                            what is normal and what should we treat?

Followed by our Annual General Meeting, a cuppa and a chat! All welcome.

 

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Our September 2016 summer get together in Ballycastle was a great success, we will post some photos soon.


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A good get together on Saturday 11th June 2016 in Craigavon

 

Time to say thank you to all our volunteers!

Thanks too to our photographer, catering manager, editor, new trustee and carer: Victor

 

Two more trustees deserving of a big thank you : Regina and Geraldine pictured on 29th Feb at the Belfast Rare Disease Day event in Riddel Hall

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Some of the attendees at our May drop in session on 05 May 2016 in Belfast:

Joy meets Susan!

SACA celebrated the 25th anniversary of their founding at their AGM in November 2015

 

 

We couldn’t let 2015 pass without a final celebration of our 25th anniversary at our Annual General Meeting held in Musgrave Bowling Pavillion, Belfast in November. We had some family fun with a Jumping Clay workshop; some juggling lessons thanks to Katie and Rachel and a relaxing hand massage thanks to a volunteer from the Red Cross. It was lovely to see our founding members Frank and Nuala Somers in the audience, without them we wouldn’t have a local charity for our Northern Ireland members to meet up and work together to improve the lives of those living with Syringomyelia and Chiari Malformations.  Don’t feel isolated or alone if you have been diagnosed with one of these conditions, get in touch and learn more about these conditions, come along to our meetings and bring your family and friends.

Nov 2015 AGM and 25th Anniversary Belfast

Learning to juggle

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We had a great day at the Syringomyelia/Chiari Conference in the Ashling Hotel, Dublin on 19th September 2015.

Our guest speakers on the day – Mr David O’Brien, Consultant Neurosurgeon, Beaumont Hospital, Dublin, Dr John Duddy, Neurosurgery Registrar, Beaumont Hospital and Siobhan Macauley, Specialist Physiotherapist Neurology, Belfast City Hospital all gave informative and interesting talks and we appreciate that they kindly gave their time to this event.

We also celebrated 25 years working together as self-help groups North & South and were delighted that Gena Scott the founding member of the Syringomyelia Self Help Group in Ireland came along and joined in our celebrations.

It was wonderful that so many attended, it certainly made our day!

SACA trustees - Eddie, Miriam, Regina and Geraldine at the Dublin Conference

 

 

Anyone else to with photos of the day to share???

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 A big thank you to:

David Mathews who completed the Mourne Mountains 7 7′s challenge on Saturday 1st August climbing 7 mountains over 700 m in one day for Syringomyelia Arnold Chiari Association and raising £316.91 to date. David decided to do this challenge for SACA and to raise awareness of these conditions which his mother Susan has.

It was a pleasure to meet up with David in Donard Park afterwards and thank him personally.

David's Mourne challenge

Miriam from SACA meeting up with David after his Mourne Challenge

 

If you would like to support David & Susan Mathews and SACA make a donation via his Justgiving page on: https://www.justgiving.com/David-Mathews3

This is a big year for our charity, our 25th anniversary – let it be a big year for donations too.

Many thanks from the committee and trustees of SACA for your support.

 

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Thanks to all who came along to our drop in session on 12th June in St John’s Church Hall, Rosetta, Belfast. It was lovely to see some new faces and to meet old friends.

An adviser from Advice NI was available to answer queries on benefits.

SACA drop in session in Belfast 12th June 2015

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Some of our members with family and friends enjoying lunch in the Kings Inn, Castlewellan. Co Down on 16th May, a great afternoon had by all.

 

This year our charity will be 25 years in existence. We have some very loyal supporters who have been with us down the years offering mutual support to old friends and newly diagnosed people and carers that get in contact with our group. I hope we can arrange some events that will make this a memorable year for all our members. Thank you to all our supporters.

 

 

 

 

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The annual Rare Disease Day event is something I look forward to attending to meet lots of interesting people and hear some inspiring talks. Previously it has been held in Belfast or Dublin, but this year it went west – all the way to the lovely Lough Erne Resort outside Enniskillen in Co Fermanagh. The Rare Disease event on 3 March 2015 was shared with a joint World Birth Defects Day Conference. Despite icy roads and snow showers six intrepid travellers representing SACA made it from Down, Antrim, Tyrone and Fermanagh. Due to the weather there were several changes to the advertised programme, which made it even more interesting particularly for our SACA member Helen Hamill who was chosen to read out the minister’s speech, well done Helen!

It was lovely meeting up with Helen, Joy, Vic and Eddie, and my OH came along too. I look forward to seeing the photos from the day and will post them soon, and I will let you know when the slides from the day are on the NIRDP website.

 

Our support of the Northern Ireland Rare Disease Partnership has not gone unnoticed and I spoke to their Chair Christine Collins the following day about some exciting ideas she has to help us raise awareness of Syringomyelia – our Rare Disease……. watch this space!!

The next day the venue was the Pavillion in Stormont – the event was the launch of the Personal Public Involvement (PPI) standards for Health and Social Care in NI and the launch of the Neurological Conditions Awareness Programme.

Many of our members will recall taking part in the  Speak up for Change survey about living with a neurological condition several years ago. After the results were published a Neurological Conditions Service Users & Carers Reference Group was established and as part of their work with the Public Health Agency this awareness programme came about. It is to raise awareness of the difficulties and challenges for people living with neurological conditions. We will receive copies of the DVD and training packs in due course and it is aimed at all staff in a wide range of service settings. Our members can all be proud of what you helped achieved by completing the Speak up for Change survey.

Carol and Fiona two of the Neuro Conditions Service User & Carer Reference Group members, with Michelle Tennyson(2nd from left), Assistant Director for Allied Health Professions and PPI in the Public Health Agency, Miriam from SACA.

 

 

The NI Rare Disease Implementation Plan was launched for consultation on 27th October 2014 by Health Minister Jim Wells, at the NIRDP Autumn Partnership meeting. The Department of Health, Social Services and Public Safety (DHSSPS) published a Statement of Intent in June 2014 which set out the Department’s approach to delivering the 51 commitments in Northern Ireland. The Implementation plan sets out in details the plans to deliver the 51 commitments.

For further details see http://www.dhsspsni.gov.uk/showconsultations?txtid=74325.

NIRDP wants to hear from you. Please send your comments / responses to info@nirdp.org.uk

Roy Beggs MLA with Miriam Martin, Chair, SACA; Lesley Rooney, Director, NIRDP, and Frances Murphy, Director NIRDP and NI Director of Contactafamily at the Rare Disease Implementation Plan Launch

 

SACA AGM took place on 18th October 2014 at Musgrave Park Bowling Pavillion, Belfast.

Dr Pamela Bell of Pain Alliance NI gave an informative and interesting talk on Positive ways of coping with Pain. If you were unable to attend – Dr Bell recommended a website to help you self manage your chronic pain, it was designed by a man who lived with chronic pain and many of the tips given by Dr Bell are included in this self-management guide. http://www.paintoolkit.org/ Thanks to Dr Bell for giving up her time to speak to our group and bringing copies of “The Painful Truth” report for our members, which gives the stories of 2,500 people living with chronic pain.

One of our members Nuala White gave an interesting talk on How Meditation has helped her cope with Pain, Nuala has found with meditation she has been able to reduce her medication and suggested that those with Chronic Pain seek out a Meditation group in their area. This tied in well with Dr Bell’s talk as Dr Bell was able to explain the effects that meditation and other relaxation techniques have on our brains and how they can help to reduce pain.

We were delighted to welcome Micky and Linda Dillon from the Irish charity Syringomyelia Self Help Group and  Fearghal McKinney, South Belfast MLA and member of the Health Committee; and Nicola Turtle of SDLP.

It was great to see such a good turnout of our members and we thank you for your support.

 

Guest Speakers: Nuala White with Dr Pamela Bell, Pain Alliance NI

Dr Pamela Bell., PANI, speaking on Positive Ways of Coping with Pain

 

 

 

 

 

Linda and Micky Dillon from the Irish Syringomyelia Self Help Group,

 

 

 

 

 

Fearghal McKinney, MLA, pictured with SACA Trustees, Geraldine Mageean, Eddie McShane, Joy Mayhew, Miriam Martin and Sam Sturgeon; and member Nuala White.

 

Pain Policy Event 15th October 2014

Thanks to Dr Pamela Bell, PANI two of our trustees, Geraldine Mageean and Eddie McShane were invited to attend the Pain Policy Event at Parliament Buildings on 15th October organised by the Patient and Client Council in partnership with the Pain Alliance of Northern Ireland. This event was attended by MLAs, patients and clients, healthcare professionals from across Northern Ireland, and representatives of the Health and Social Care Board, Public Health Agency and various charities.

Geraldine and Eddie found the event very worthwhile and had the opportunity to hear from healthcare professionals delivering services for those with chronic pain. A full report on the event is available at: http://www.patientclientcouncil.hscni.net/membership-scheme/articles/pain-policy-event-2014-making-a-difference

 

 

What a great day we had on Saturday 20th September in Belfast at the first Disability Pride in the UK or Ireland. Lots of fun, the sun came out and brought the crowds out, and we can’t wait till next year!

 

 

 

 

 

 

 

 

 

      

 

 

 

 

 

 

 

 

 

 

 

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Our Spring/Summer Meet Ups

At Marine Hotel, Ballycastle 30th August

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Our members and friends had a lovely meal and chat in the Marine Hotel, Ballycastle on Saturday 30th August. The sun shone and a few enjoyed the late afternoon sun and enjoyed a walk on the beach or along the promenade before we set off for home. Thanks to those who supported our meet ups this year:  in May in Donaghadee and in June in Antrim.  If you would like a similar event in your area or would like to meet up for a cuppa and a chat get in touch by email on saca.info@yahoo.co.uk or phone our Helpline on 078 26 004 008

Nice to see some younger faces and a cute baby at the Ramble Inn in June!

 

Donaghadee on 10th May 2014

 

 

 

 

 

 


At Pier 36 10th May 2014: SACA friends and family

 

Some of us left room for desert at Pier 36

Enjoying good food and a friendly chat at SACA gathering in Pier 36


 

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SACA members attended the launch of the Living Every Day with a Rare Disease Survey at Stormont in January 2014.

Dearbhail & Regina Maguire, Miriam Martin, Joy Mayhew promoting SACA at Rare Disease Reception in Long Gallery Stormont 13 Jan 2014

 

Launching the survey, Michelle Tennyson from the PHA said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

SACA appeals to members to complete the survey….

they need your help and want to know about your experiences, good and bad. Your knowledge and experience will shape the way that treatment, care and services are managed and delivered.

This is your opportunity to have your voice heard, please complete the survey here: http://www.nirdp.org.uk/living-every-day-with-rare-disease/

logoRDD14

SACA members meet Fearghal McKinney MLA and member of Health Committee at Rare Diseases  Long Gallery Reception in Stormont – 13 Jan 2014

 

Some photos from our AGM in October 2013 held in the Bowling Pavillion, Musgrave Park, Belfast.

At SACA AGM

Mr John Gray, Consultant Neurosurgeon giving a talk on Chiari and Syringomyelia

 

At Mr John Gray's talk on Chiari and Syringomyelia at SACA AGM

 

Time for a cuppa and a chat at SACA A

 

 

 

 

 

Down to business - the Trustees

 

 

 

 

Ballycastle Informal Gathering

 On 7th September 2013 we met in the Marine Hotel, Ballycastle where we had a lovely lunch with some of our members. More photos in our Gallery.

At Marine Hotel, Leanne, Helen, Nuala and Anne

 

At Marine Hotel, Frank, Geraldine and Johnny

At Marine Hotel, Sam, Rose, Alison and Nuala

 

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Welcome to our new website

We look forward to hearing from people living with Syringomyelia and/or Chiari, please feel free to post your comment, share your story, drop in again to read the comments and get updates on what is happening in our charity.

We have added a new page Personal Requests and Stories, you can request the Moderator to add your Story/Request by e-mailing : saca.info@yahoo.co.uk

You can reply by e-mail or post your comment using the website.

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Awareness Campaign

Last Autumn we started an awareness campaign by sending GP’s our posters and information leaflets.

This year we’d like you to help us spread the word by asking your local library to display our posters and leaflets.  Contact saca.info@yahoo.co.uk if you can help.

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Check out the Gallery to meet some of our members ………

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