This week, An Bord Pleanla upheld the Planning permission granted by Kerry County Council to allow the construction of Liam’s Lodge. Liam’s Lodge will be a new national respite centre for children with complex needs, genetic, rare & life limiting disorders in Curragraigue, Blennerville, Co Kerry. Speaking today Tony Heffernan the CEO of the Saoirse...
Author: admin (Ann Healy Brassil)
Thank you Loughfounder National School
A massive THANK YOU to the amazing students and teachers at Loughfouder National School, Knocknagoshel who raised €300.00 on behalf of Liam’s Lodge. You are brilliant! Special thanks to Principal Ms. Liz Lane, Teacher Ross Walsh & SNA Maura Culhane for making us feel SO very welcome!
The Saoirse Foundation – 6th Birthday Today
The Saoirse Foundation – 6th Birthday Today 31 MARCH 2016 IT’s TIME TO CELEBRATE!! The Saoirse Foundation is SIX YEARS OLD today. We cannot believe how time has flown by 6 years of supporting critically ill children nationwide 6 years of fighting against Battens Disease 6 Years of supporting ground breaking research into rare...
Web Information for Families of Children with Rare Diseases – Parent to Parent Support
As a follow on from the 2014 study Web Information for Families of Children with Rare Diseases The Saoirse Foundation is pleased to announce an addition to the proposed website of parents of children with rare conditions. The addition is the development of the website’s parent to parent support, a recommendation from parents who took...
Rare Disease Day February 28th 2015
8th Annual Rare Disease Day Liams Lodge proudly supports Rare Disease Day. Rare Disease Day was established to raise awareness with the public about rare diseases. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. Rare Disease Day focuses on the day to day lives of patients living with a...
Needs Assessment & Feasibility Analysis
Honor Nicholl, a registered children’s nurse and Assistant Professor in the School of Nursing and Midwifery in Trinity College Dublin (TCD), along with some of her colleagues are currently undertaking a needs assessment and feasibility analysis for a national centre encompassing a respite care unit for children with rare conditions and hospice type services for...
Matt Cooper on board the Megapush
We are delighted to announce that journalist, author, television presenter and radio presenter of The Last Word on Today FM, Matt Cooper has become a Patron of the Saoirse Foundation, the charity set up by fellow Corkman Tony Heffernan in 2010, named after his late daughter Saoirse. The not for profit charity operates a couple...
Enterprise Ireland & New Frontiers Event: “Networking with a Conscience”
Kerry’s newest and finest entrepreneurs on the New Frontiers programme are hosting a high powered information and networking session on Wednesday 30th July at 7pm sharp in Fels Point Hotel. Guest speakers include Eamon Fitzpatrick, Sales Director of the Irish Times newspaper, Samantha Kelly, Tweeting Godess and #IrishBizParty Founder and “Marathon Man” Gerry Duffy Entrance...
Irelands 1st National Rare Disease Plan Launched
On the day that young Liam Heffernan should have been celebrating his 6th birthday with is mom and dad on the Dingle Peninsula, his father Tony Heffernan, will be assisting with the launch of Ireland’s First Rare Disease Plan which is being formally unveiled by Minister for Health James Reilly today in Dublin...
Planning Application Submitted for Liams Lodge
We are delighted to announce that the planning application for Liams Lodge has been submitted to Kerry County Council. David Moriarty of David Moriarty and Associates Architects very generously donated his time and services and provided all the architectural work for the application free of charge. Liams Lodge will be Ireland’s first dedicated National Respite...
We Need YOU : Get Involved in the The Saoirse Foundation & TCD On Rare And Genetic Diseases Questionaire
The Saoirse Foundation in partnership with a team of researchers led by Dr Honor Nicholl, School of Nursing and Midwifery at Trinity College Dublin is pleased to announce a forthcoming research study that will investigate the information needs of parents of children with rare diseases (The RD-WIFI study). The study is made up of two...
Kerry Set To Buzz For World Battens Day 2014
KERRY SET TO BUZZ FOR WORLD BATTENS DAY Killarney, June 1st 2014, The Saoirse Foundation will celebrate the 4th Annual World Battens Day with a family fun extravaganza at The Kerry Way Killarney, from 12pm to 6pm on Saturday 7th June 2014. Why not bring the whole family along for a great day of fun,...
Dublin Gospel Choir To Sing For Liam’s Lodge in Summer Extravaganza
The Dublin Gospel Choir will be on hand to help raise funds for Liams Lodge for Ecocem on Thursday May 29th. Organised by Ecocem, the world’s most sustainable building material, the concert in Dublin’s Charlemont Hilton Hotel is due to offer a great musical experience to concert goers who can sample a musical atmosphere before...
ECOCEM Next Generation Cement host Concert with Dublin Gospel Choir for Liam’s Lodge
Ecocem, the world’s most sustainable building material, based in Dublin have chosen Liam’s Lodge as their charity of the year and have organised a singing extravaganza, charity concert on May 29th next in the Hilton Hotel Charlemont Dublin 2. The event, which promises to be a singing delight will feature...
Help Wanted: Call for volunteers!
Liam’s Lodge is looking for volunteers for May 31st and june 2nd to help marshal the Tour of Kerry cycle race of which the Saoirse Foundation, including the Liam’s Lodge project and BUMBLEance are beneficiaries. We need volunteers for a few hours between 9.30 and 5.30 on the two days. It is going to be...
Dingle Women’s Mini Marathon: Calling Mná na hÉireann!
Dingle Women’s Mini Marathon: Calling Mná na hÉireann! The countdown has begun to the Dingle Women’s Mini Marathon (DWMM) which will be held on Saturday, May 17th 2014. This year’s event is expected to build on the success of last year’s inaugural DWMM and Liams lodge are delighted to have been chosen as one of the charities...
The Saoirse Foundation & Trinity College Dublin, Launch Study on Rare Diseases
The Saoirse Foundation in partnership with a team of researchers led by Dr Honor Nicholl, School of Nursing and Midwifery Trinity College, Dublin is pleased to announce a forthcoming research study that will investigate the information needs of parents of children with rare diseases (The RD-WIFI study). All parents and guardians are invited to take...
#LittleLiamo (5) Tragically Loses Battle Against Batten Disease.
Little five year old (5) Liam Heffernan (#LittleLiamo) has peacefully passed away in the arms of his Parents Tony & Mary Heffernan, at 6:58am this morning (May 4th) following a battle for life against Batten’s Disease at the family home in Keel in Co Kerry. Liam who enjoyed life and was known across the world...
Liams Lodge Public Information Night Friday the 11th April
We would like to invite you to join us for a public information evening regarding the planning process for Liam’s Lodge which will take place on Friday the 11th April from 6-9pm in the Fels Point Hotel, Tralee. A presentation will be given by Tony Heffernan, CEO of the Saoirse Foundation and David Moriarty of David Moriarty and...
The Heffernan’s mark National Rare Disease Day as a family at home
Saoirse Heffernan lost her battle with the rare disease, Battens Disease in 2011 at age five. Her parents, Tony and Mary Heffernan set up The Saoirse Foundation in her honour and in the honour of those currently living with genetic & rare diseases affecting people in Ireland. Their son Liam, now 5, was also diagnosed...
Mods and Minis choose Liam’s Lodge as their Charity of the Year for 2014
Strength in Munster Mods and Minis choose Liam’s Lodge as their Charity of the Year for 2014 Mods and Minis have chosen Liam’s Lodge as their charity of the year for 2014. Liams Lodge was founded by Tony and Mary Heffernan from Keel, Co. Kerry. It will be Ireland’s first National Respite Centre which will...
Liams Lodge , €50,000 of Cement and a 40′ Dinosaur 18 Wheeler!
‘Liam’s Lodge’ is delighted to announce that we have received our first large donation of building materials ,valued at over €50,000. With construction due to commence later this year, this donation by Dublin based Ecocem is a huge boost to our charity. Up to eight percent of Irish people are affected by rare...