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The BUMBLEance Megapush gets on the road today, Wednesday September 10th. Kerryman, Ice Explorer & adventurer Mike O’Shea from Dingle, recently visited Tony Heffernan (originally from Cork) in his family ...

Cooper Gives the BUMBLEance an Extra Shove We are delighted to announce that journalist, author, television presenter and radio presenter of The Last Word on Today FM, Matt Cooper has ...

Today see’s the launch of a spectacular and challenging fundraiser, the first of its kind to be undertaken in Ireland. Kerryman, Ice Explorer & adventurer Mike O’Shea from Dingle, recently ...

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 ...

Media Release                May 5th 2014. #LittleLiamo (5) Tragically Loses Battle Against Batten Disease. Little five year old (5) Liam Heffernan (#LittleLiamo) has peacefully passed away in the arms of ...

“You Will Never Walk Alone” is the message being sent across Ireland today as Liverpool Legend Jamie Carragher & his Charity “the 23 Foundation” team up with The Saoirse Foundation, ...

The BUMBLEance will facilitate scheduled hospital/ treatment visits for children that meet set medical criteria Dublin 6th September: BUMBLEance, the World’s 1st interactive children’s ambulance which was revealed today for ...

The Town of Killarney is buzzing with excitement this week with the announcement of the first full distance marathon to be held in the town on the 20th July 2013. ...

The National Children’s Charity, Bee For Battens, in partnership with Oslo GAA, Norway have entered into the history books of Croke Park, by having the charity’s distinctive bumble bee logo ...

PRESS OFFICE

Tony Heffernan
Founder & CEO
Tel: 083 0044444
Email: news(at)saoirsefoundation.com
Emergency No.: 0872359602

ADDRESS

Castledrum
Castlemaine
Co. Kerry
Ireland
Tel: 0830044444
Email: news(at)saoirsefoundation.com

ABOUT THE SAOIRSE FOUNDATION

The Saoirse Foundation has a simple moto, everything we do must "MAKE POSITIVE LIFE IMPACTS FOR SICK CHILDREN"

To do this, we ensure we motivate our people, our board and the public & business communities so as create better awareness, while ensuring that over 92% of everything we raise goes to the cause.

About Us!

Following the diagnosis of their children, Saoirse & Liam with the Ultra Rare and fatal condition Batten's Disease, Tony and Mary Heffernan decided to set up the Saoirse Foundation / Bee For Battens initally to provide parents, families and all those affected by Battens Disease on the island of Ireland with a support, networking, and a credible source of information. The Charity also became a member of a new global initiative between Patient Support & Research organization's worldwide.

Now The Charity is building Liam's Lodge, Ireland’s first National Children's Respite Centre for children affected by rare diseases and genetic disorders and their families.

The centre will be built in the scenic location of Blennerville in County Kerry, on the outskirts of Tralee Town

Liam’s Lodge will provide full respite care services in custom built family units, where loved ones with rare and genetic disorders will be provided with the care they need, while the child’s parents and siblings are given the chance to get some much needed rest and family time.

The centre will provide families with a full week’s break with comprehensive care plans pre-agreed for each child, delivered by highly trained medical and care personnel.

With ten units or ‘homes away from homes’ in phase one, Liam’s Lodge will cater for 520 families each year initially. A further two phases of similar size will be added later, allowing Liam’s Lodge cater for over 1,560 families a year. 

Up to eight per cent of Irish people are affected by rare diseases. About 70 per cent are children, from which 30 per cent will die before reaching their fifth birthday. With potentially over 200,000 children affected by rare disease in Ireland, with no designated centre for rare and genetic disorders, until now!

The centre is also partnering with third level medical university & colleges to provide accredited training courses in Rare and genetic disorders.

 

SHARE OUR USER PAGE

TWITTER @BeeForBattens

RT @AngeCMJ Please support Lucy Loom Bands in aid of @BUMBLEance @BeeForBattens @BumbleBox2014 http://t.co/1NK283GVAs €455 raised in 2 wee…
BeeForBattens 29 Oct 22:25

RT @BumbleBox2014 RT @BUMBLEance @BeeForBattens a few spaces left to advertise in our programme which has a huge reach!Please email bumble…
BeeForBattens 29 Oct 22:24

"@AngeCMJ Thank you @davidhall75 @BeeForBattens @BUMBLEance a very special journey x x x #Bumbleance http://t.co/OQTO8rIsLo" home safe!
BeeForBattens 29 Oct 16:14

Your welcome @AngeCMJ We are taking a very special trip in @BUMBLEance today...#dolly thank you @BeeForBattens x http://t.co/7ZHn6urZAR
BeeForBattens 29 Oct 16:13

TWITTER @LiamsLodge

heading to http://t.co/6O6oN6rmGH Pallative Hub launch 4 kids & young people. @Saoirse_fdn will play its part via @LiamsLodge & @BUMBLEance
LiamsLodge 29 Oct 11:19

Best of luck to all of our runners in the #Dublin Marathon tomorrow. Enjoy the day and thank you for supporting us http://t.co/FD2jXhQgJa
LiamsLodge 25 Oct 22:15

RT @SWAN_UK @LiamsLodge Pls RT - Belfast Undiagnosed Genetic Conditions Info Event 14/11/14. Register Free http://t.co/XUDM73elHr #undiagn…
LiamsLodge 24 Oct 22:37

RT @BUMBLEance Tomorrow will be the busiest day for #BUMBLEANCE to date! 3 children & trips, totaling over 1180km, 2 crews, 1 charity deli…
LiamsLodge 22 Oct 20:22

TWITTER @Saoirse_Fdn

heading to http://t.co/NegukLlFd9 Pallative Hub launch 4 kids & young people. @Saoirse_fdn will play its part via @LiamsLodge & @BUMBLEance
Saoirse_Fdn 29 Oct 11:19

RT @BUMBLEance what a busy day! tomorrow we've 3 trips, 3 kids fm 3 counties #Roscommon #Kildare & #Kerry. 1 busy as a bee charity! http:/…
Saoirse_Fdn 28 Oct 21:37

Best of luck to all of our runners in the #Dublin Marathon tomorrow. Enjoy the day and thank you for supporting us http://t.co/sLIKczK93s
Saoirse_Fdn 25 Oct 22:15

RT @BeeForBattens I told @AVIVAIRELAND ages ago that our two kids had passed away fm #BattenDisease I now rec'd this 'thoughful text' http…
Saoirse_Fdn 20 Oct 12:32

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