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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 @Ly211 @MENnewsdesk #FindPaulLynott my much-loved brother missing from Offerton, Stockport, for two weeks.#Pleasehelp http://t.co/i2OqM…
BeeForBattens 01 Mar 23:27

RT @DaveForgiveness Bullying in workplaces needs to be addressed, especially in small organisations http://t.co/FcnDIDyFgZ"
BeeForBattens 01 Mar 20:20

Brilliant brilliant initiative from the @NHS in England about #RareDisease http://t.co/JCa3bLanM0 pls pls share #BattenDisease #IRLneedsTHIS
BeeForBattens 01 Mar 19:37

@mtmccartin best of luck and please pass on my regards to Liam o Neill and Aogan!
BeeForBattens 28 Feb 21:34

TWITTER @LiamsLodge

RT @BeeForBattens Brilliant brilliant initiative from the @NHS in England about #RareDisease http://t.co/JCa3bLanM0 pls pls share #BattenD…
LiamsLodge 01 Mar 19:40

RT @BUMBLEance @irlfunds thank you once more the support & for the significant 3 page article in the Connect magazine! @IrelandFund http:/…
LiamsLodge 26 Feb 21:33

Let's see what tomorrow brings..... @beeforbattens @Saoirse_Fdn bringing focus & action for #RareDisease to http://t.co/KN1wGK5JHW
LiamsLodge 25 Feb 23:56

RT @BUMBLEance Tiny fighter Adam King, Killeagh Co #Cork onboard earlier to #Dublin, but due to no hospital bed,had to return home! http:/…
LiamsLodge 16 Feb 12:25

TWITTER @Saoirse_Fdn

RT @BeeForBattens Brilliant brilliant initiative from the @NHS in England about #RareDisease http://t.co/JCa3bLanM0 pls pls share #BattenD…
Saoirse_Fdn 01 Mar 19:40

RT @BUMBLEance @irlfunds thank you once more the support & for the significant 3 page article in the Connect magazine! @IrelandFund http:/…
Saoirse_Fdn 26 Feb 21:33

Let's see what tomorrow brings..... @beeforbattens @Saoirse_Fdn bringing focus & action for #RareDisease to http://t.co/ybeF8YThjD
Saoirse_Fdn 25 Feb 23:56

RT @IPPOSI Event prog out for IPPOSI Orphan Drugs meeting: http://t.co/WyTbwOrjQE @fightngblindnes @GRDO_IRELAND @Saoirse_Fdn http://t.co/…
Saoirse_Fdn 19 Feb 0:03

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