The Buzz Blog -

PostedApr22

Abbey's Army Antics

Posted by Bee For Battens in Events | 0 comments

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Please support Abbey McGuinness and the fight against Batten's Disease.

Abbey's Army Antics will take place on Saturday, 30 April at 8.30pm in the Greenhills Community Centre. It promises to be a great night for all the family.

The upcoming Irish band Wairwe Land and friends including singers Laura and Sarah Craine, Ir

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PostedApr04

Sponsorship: Donal Murtagh Mobility LTD

Posted by Bee For Battens in Sponsorship | 0 comments

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Bee For Battens is proud of our sponsorship arrangement with Donal Murtagh Mobility LTD. Not only are Donal Murtagh Mobility LTD supporting the Charity they are also assisting in Promoting Our charity at their trade shows and at their premises in Moath, Co Westmeath!

 

 

About Donal Murtagh Mobility LTD:

&nbs

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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 support

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PostedOct20

RUN-A-MUCK – GO TEAM ABBEY!!

Posted by Samantha Jones in News | 0 comments

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RUN-A-MUCK – GO TEAM ABBEY!!



MASSIVE CONGRATS to TEAM ABBEY for your ongoing phenomenal support. You guys are AMAZING!

Over 200 BEE for Battens supporters took part in last weekends Run-A-Muck event in support of our Queen BEE Abbey and BEE for BATTENS disease. The event took place on the grounds of Clonkeeran House, Co. Kilda

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PostedOct14

The Saoirse Foundation

Posted by Bee For Battens in News | 0 comments

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The Board of the Saoirse Foundation are committed to being fully compliant with the requirements of the Governance Code and will continue to implement the Principles of Good Governance and verify our commitment on an annual basis.

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BioMarin Pharmaceutical Inc. announced on the 12th of January interim results from a pivotal study for cerliponase alfa, a recombinant human tripeptidyl peptidase 1 to treat of patients with late infantile CLN2 disease, a form of Batten disease.

The interim data indicates that in all nine of the BMN 190 patients who have been followed for a

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PostedAug29

Volunteers Wanted

Posted by Bee For Battens in Events | 0 comments

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Bee For Battens is the National Charity For Batten Disease in Ireland, a part of the Saoirse Foundation, a registered non-profit charity in Ireland, based in Co. Kerry.

 

The charity operates throughout Ireland, helping families North & South of the Border.

We are always developing our charity to further our goals and make a

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PostedAug29

We are Hiring!

Posted by Saoirse Foundation in Opportunities | 0 comments

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Project & Engagement Manager (Maternity Cover)

 

The successful candidate will have a good track record of success in fundraising, marketing and/or business development. You will need to be a highly creative strategic thinker with the ability to deliver impactful and engaging projects and communications, be target orientated, an

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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 of innov

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PostedJul02

National Rare Disease Plan Launch

Posted by Bee For Battens in News | 0 comments

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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 (June 3rd 2014).

M

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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 separate

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PostedJun05

Kerry Set To Buzz For World Battens Day 2014

Posted by Michelle Daly Hayes in Events | 0 comments

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Bee For Battens and The Saoirse Foundation will celebrate the 4thAnnual World Battens Day with a family fun extravaganza at The Kerry Way Killarney, from 12pm to 6pm on Saturday 7thJune 2014. 

Why not bring the whole family along for a great day of fun, entertainment and prizes galore?. Our World Battens Day celebrations will kick

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PostedJun01

Kerry Set To Buzz For World Battens Day 2014

Posted by Michelle Daly Hayes in Events | 0 comments

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Killarney, June 1st 2014, The Saoirse Foundation and Bee For Battens.org 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, entertainment and prizes galore?. Our World Battens Day ce

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PostedMay13

Join Our Rare Diseases Study With TCD

Posted by Michelle Daly Hayes in Events | 0 comments

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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

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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 for his passion for di

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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 with Battens Disease at

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PostedDec07

Get Your Hands on Imelda May's Guitar!

Posted by Bee For Battens in Events | 0 comments

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Bee for Battens to Strum up Funds thanks to Bord Gáis Energy and Imelda May!

Bee for Battens, an Irish charity established to help families of children diagnosed with Battens disease, is the winner of a Bord Gáis Energy competition which invited Facebook followers to nominate a charity to win a signed guitar belonging to Irish

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PostedNov18

New Batten Disease Trial Launched

Posted by Bee For Battens in News | 0 comments

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BioMarin CLN2 (Late Infantile Trial) begins at the Evelina Children's Hospital London

 

The Evelina Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London has begun recruiting subjects with late infantile CLN2 disease, a form of Batten disease, for a clinical trial.  The trial will examine

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PostedNov18

New Batten Disease Trial Launched

Posted by Bee For Battens in Research News | 0 comments

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BioMarin CLN2 (Late Infantile Trial) begins at the Evelina Children's Hospital London

 

The Evelina Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London has begun recruiting subjects with late infantile CLN2 disease, a form of Batten disease, for a clinical trial.  The trial will examine

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PostedNov18

We are Hiring Head of Fundraising

Posted by Bee For Battens in News | 0 comments

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We are Recruiting

 

The Saoirse Foundation Continues to grow and with this we are now seeking a Head Of Fundraising:

 

JOB TILE: Head of Fundraising - The Saoirse Foundation

 

LOCATION: Munster Based (preferred / other dependent on candidate)

 

APPLICATION CLOSING DATE: 31st  December 2013

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PostedNov01

OSLO SANTA SKI RUN 2013

Posted by Bee For Battens in Events | 0 comments

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It's Back !

2013 see's the welcome return of the Oslo Santa Ski Run which will be held at the Oslo Vinterpark, on Saturday 14th December.

The event will hopefully be opened by the Irish Ambassador to Norway, and we are very grateful for the support of Oslo GAA & the Norwegian Irish Society who are backing this unique eve

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PostedOct27

We Are Hiring, Administration Assitant

Posted by The Saoirse Foundation in News | 2 comments

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An Office Administrator is required in Kerry to provide high quality business administration to support the day to day activities of the charity.  This is a front of house role, and requires an enthusiastic individual with excellent communication skills. This is a Full Time Position.

The primary focus of the role will be to provide admi

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PostedSep18

You'll Never Walk Alone Jamie Carragher

Posted by Bee For Battens in News | 0 comments

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“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, to support sick children & those affected by rare & genetic disorders and Irish charity’s mission statement to &l

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PostedAug16

New B4B GAA Jersey!

Posted by Bee For Battens in Events | 0 comments

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Bee For Battens are delighted to announce the launch of their new Oslo GAA training kit.

 

The new jersey, which is modelled here by multi All Ireland winning  Colm "the Gooch" Cooper Kerry Senior Football Captain & Ladies Captain Bernie Breen. The charity also has the original jerseys, which we launched last

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PostedMay05

World Battens Day June 1st 2013

Posted by Bee For Battens in Events | 0 comments

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World Battens Day is Back  & With Free Admission Yet Again!

This Year Ireland will mark its 4th official World Battens Disease Awareness Day is a very special way. This years event is being held at The Kerry Way Killarney, (from 12.00 : 19:00)


Entry is free for all the family. The event will feature lots of live bands includi

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PostedMay01

2013/2014 Quality Hotel Charity of the Year

Posted by Bee For Battens in News | 0 comments

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Bee For Battens are delighted to announce that we have been made the 2013/2014 charity of the year for the Quality Hotel Killarney Co Kerry

Speaking at the announcement today, Aidan Moynihan, Manager of the Hotel announced that the Quality Hotel and its facilities are at the disposal of the charity over the coming year and the hotel will run

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PostedMar21

Liams Lodge Project Launched!

Posted by Bee For Battens in Liams Lodge | 1 comments

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Parents launch Ireland’s first Rare Disease Respite Centre

 

30 per cent of children with rare diseases die before their fifth birthday

 

Today sees the official launch of the new site for Ireland’s first National Respite Centre for children affected by rare diseases and genetic disorders and thei

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PostedMar04

TVM Ireland's Outside Broadcast Facilities

Posted by Bee For Battens in Sponsorship | 0 comments

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Bee For Battens is delighted that TVM continue to help Bee For Battens.TVM has been supporitng us for over two years and you can frequently see our logo displayed on the TV monitors at every racecourse and event throught Ireland. This relationship, we are happy to report continues into 2013

Pictured here are the Arnold family (Marie, Bart, T

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PostedFeb28

Official 2012 All Ireland Match Football Auction!

Posted by Bee For Battens in Events | 1 comments

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UPDATE : 03/03/13 current bid $1500

This is the actual 2012 All Ireland Football from the final between the Donegal and Mayo. This is a Unique piece of GAA history and it has been signed by the enitre Donegal Squad. This Ball was donated to us by the president of the GAA Liam O Neill and will be auctioned off to the highest bidder. The money

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PostedFeb27

2 Year US Research Project Launched.

Posted by Tony Heffernan in Research News | 0 comments

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Bee For Battens is pleased to announce that it has entered into a two year project with Dr Steven Gray of The Gene Therapy Centre of the University of North Carolina , one of the United States Leading Gene Therapy Lads.

The Project which was sanctioned on Jan 18th 2011, the 2nd Anniversary of Batten Disease sufferer Saoirse Heffernan, who di

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PostedFeb27

2 Year US Research Project Launched.

Posted by Bee For Battens in News | 0 comments

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Bee For Battens is pleased to announce that it has entered into a two year project with Dr Steven Gray of The Gene Therapy Centre of the University of North Carolina , one of the United States Leading Gene Therapy Lads.

The Project which was sanctioned on Jan 18th 2011, the 2nd Anniversary of Batten Disease sufferer Saoirse Heffer

Read more...

PostedFeb27

DAA 2013 Charity of The Year Launch

Posted by Bee for Battens in Events | 0 comments

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There was a great buzz in Dublin Airport this week at the launch of the 2013 chariity of the year as Kewin Towland , new CEO of the DAA made the formal announcement.


We are Absolutely Thrilled to be Named as the Principal Charity for 2013 for the DAA airports throughout Ireland. In total 3 charities were chosen, with Make A Wish & Do

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PostedFeb16

It starts at the Begining

Posted by Tony Heffernan in BeeCause & Run Killarney | 1 comments

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Right Folks, this is my first ever attempt at a blog and lets see how it goes.

A few weeks ago now, I had a meeting with Triona & Oliver from Elite Evnts in Killarney, telling me that Bee For Battens had been selected as the charity partner for Run Killarney event this July 20th. Shortly after this meeting we had the news that our friend

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PostedFeb15

Job: National Development Manager

Posted by Bee For Battens in News | 1 comments

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We are pleased to announce that were are expanding and are recruiting a National Development Managerfor the Saoirse Foundation:

 

Full Details are available at this link.

 

Good Luck: 

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PostedFeb01

Get Your Views Heard, Dublin May 13th

Posted by Bee For Battens in Research News | 0 comments

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Get Your Views Heard - Recruiting now!

New medicines: How should we weigh the risks and benefits? And who should do so?

 

As part of a European research study, Genetic Alliance UK and the Welsh Institute for Health and Social Care (at the University of Glamorgan, UK) want to understand how individuals

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PostedJan26

BioMarin Making Big Steps in Batten Disease

Posted by Bee For Battens in Research News | 0 comments

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BioMarin seeks to test enzyme-replacement therapy in Batten Disease patients

 

BioMarin Pharmaceutical Inc. doesn't back down from a tough rare disease.

The Novato company (NASDAQ: BMRN), which made its name with enzyme-replacement therapies that tackle virtually unpronounceable orphan diseases like phenylket

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PostedJan07

BeeCome a Volunteer

Posted by Bee for Battens in News | 0 comments

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We are now recruiting volunteers!

If you would like to become a volunteer for  Bee for Battens please email your Name, Address and telephone number to: info@beeforbattens.org.

Create your own fundraising events, participate in organised events within your area or simply be a supporter of the charity and help our awareness campaign.

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PostedDec23

DAA Principal Charity Of The Year

Posted by Bee for Battens in News | 0 comments

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We are Absolutely Thrilled to be Named as the Principal Charity for 2013 for the DAA airports throughout Ireland. In total 3 charities were chosen, with Make A Wish & Down Syndrome Ireland joining us. 50% of the funds raised will go to us while the other 50% will be spilt equally between the other two charities.

The result com

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PostedDec20

DAA Charity of the Year 2013

Posted by Bee for Battens in News | 0 comments

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We are delighted to announce that Bee for Battens has been selected as the DAA Principle Charity of the Year 2013. Thank you to all the staff at Dublin, Shannon and Cork Airport.

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PostedDec13

Killarney Buzzing About New Marathon

Posted by Bee for Battens in Events | 0 comments

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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. With a half marathon and a 10K race on the same day this will be one date eagerly anticipated by all running enthusiasts. A fast downhill course with amazing scenery is certainly a com

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PostedDec12

Christmas Raffle, Name that Tune Music Night

Posted by Bee for Battens in Events | 0 comments

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Enter our Christmas Raffle and win tickets to see Pat Shortt at the INEC, a luxury hotel break, Oslo GAA Bee for Battens Jersey,plus many other goodies!!! Just email your Name, Address and contact number to info@beeforbattens.org and put subject as Raffle Tickets. Payment can made via our website  http://www.beeforbattens.org/don

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PostedDec04

Bee the Book on the Late Late Toy Show

Posted by Bee for Battens in News | 0 comments

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We were delighted to see Bee the Book on the Late Late Toy Show last Friday. Not only was the book featured but Ryan also put his head through to demonstrate how to use the book!! A great result considering the thousands of toys that apply to go onthe show.

Order your copy for Christmas www.beethebooks.com or send us an email info@

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PostedNov29

Santa Sleigh Ride supports Bee for Battens

Posted by Bee for Battens in Events | 0 comments

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We would like to thank Santa Sleigh Ride in Blanchardstown Dublin, for supporting Bee for Battens, Its a fantastic idea where children (and adults) sit in a sleigh and can get a dvd of them travelling to Lapland and meeting THE SANTA CLAUS!!!! Donations can be made at Santa Sleigh Ride for Bee for Battens. Im getting that christmassy feeling!!!!

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PostedNov29

Get your orders in for Christmas!!!

Posted by Bee for Battens in News | 0 comments
PostedNov15

Bee The Book On Sale Now!

Posted by Bee For Battens in Events | 0 comments

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Want to Get A Fantastic Book For Your Child This Christmas

BEE THE BOOK : FARM FRIENDS

Bee The Book : Farm Friends is a novel and interactive approach to storytelling . Based on a new innovative design this book allows the reader to become the characters in it.




 Look through the hole and read the rhyme on the flap

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PostedSep26

Scientists Identify Drugs for Batten Disease

Posted by Bee for Battens in Research News | 0 comments

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Some fantastic news for Batten Disease, it may not work for every child, but who knows!

 http://www.24-7pressrelease.com/press-release/scientists-identify-drugs-for-batten-disease-304304.php

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PostedSep25

Bumble Bee’s & A Dinosaur in Croke Park

Posted by Bee for Battens in Oslo GAA | 0 comments

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Bumble Bee’s & A Dinosaur take to pitch of Croke Park as Charity Launches GAA Jersey!

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 featured on the club team’s new ki

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PostedSep22

Charity GAA Jersey For Christmas

Posted by Bee For Battens in News | 0 comments

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This Christmas, Gift Your Loved One Our Exclusive O'Neills Bee For Battens / Oslo GAA Jerseys

This is a Nonprofit campaign, our hope is to raise awareness and help those affected by this rare neuro-degenerative condition, which affects Babies and Young Children.

 

 

So Grab your very own limited edition jersey

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PostedSep14

Bee-Come Involved!

Posted by Debbie Young in News | 0 comments

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Please share this link and spread the word. We are asking you & everyone out there, whether in Ireland, Australia or on a desert island, to get involved in organising either a fundraising event or donations activity for Bee for Battens.

It could be as simple as being sponsored to wash up or as big as a concert in the O2 Arena! Maybe get

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PostedSep04

Evening Echo Cork Mini Marathon

Posted by Debbie Young in Fundraising | 0 comments

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  Good luck to all the ladies taking part in the 31st Evening Echo Cork Mini Marathon, Sunday 16th September 2012

http://www.eveningecho.ie/evening-echo-mini-marathon/

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PostedSep04

Helly Hanson Killarney Adventure Race 2012

Posted by Debbie Young in Fundraising | 0 comments

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Saturday 6th October 2012
 http://www.youtube.com/watch?v=kZe15_IDYbM&feature=plcp

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PostedSep03

Humpty Dumpty Duathlon, Kenmare Sat Oct 27th

Posted by Bee for Battens in Events | 0 comments

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Its Back Again This October 27th

Kenmare town is fast gaining a reputation as Ireland’s fittest town. On the October weekend, Saturday Oct 27th Kenmare will host its third duathalon, a 40km Cycle and a 6km Run. It is open to everyone, individuals and relay teams. Funds raised from the event will be donated to BEE FOR BATTENS (main char

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PostedSep02

OSLO GAA : Get Your Kit On!

Posted by Bee For Battens in Oslo GAA | 0 comments

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Get Your Kit On!     Grab your very own limited edition jersey & Win

 

Oslo GAA has become the First Club Team in GAA History to include a Charity Logo on their Jersey.

We are proud to display our Bee for Battens logo on their kit.

 

This was made possible by the generosity of spon

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PostedJul27

Marie Therese Mc Cartin Interview

Posted by Mai in News | 0 comments

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http://www.youtube.com/watch?v=gwdtiAxlD2c&list=UUvOwvxlGqd6fmUjOw8ptqdw&index=1&feature=plcp Interview WithMarie Therese Mc Cartin supporting Bee for battens. Well done :)

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PostedJul26

Another April Day Therese Mc cartin

Posted by Mai in Events | 0 comments

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Renowned pianist, Therese McCartin, is bringing her musical career on a new journey with her latest recording, Another April Day. The Artist is donating a proportion of all sales to charity, namely Bee for Battens, The Saoirse Foundation. Described as “easy listening” the finished album is both beautiful and moving in equal meas

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The Jimmy Devane Memorial Killarney & District Motor Club Grass Surface Autocross will take place on Sunday 5th August 2012. The venue is in Farranfore, Killarney, Co-Kerry and will be sign posted on the day from Farranfore Village. Last year was the first running of the event under its current name The Jimmy Devane Memorial Autocross. Jimmy

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PostedJul26

KDMC Autocross : Farranfore

Posted by Bee For Battens in Events | 0 comments

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The Jimmy Devane Memorial Killarney & District Motor Club Grass Surface Autocross will take place on Sunday 5th August 2012. The venue is in Farranfore, Killarney, Co-Kerry and will be sign posted on the day from Farranfore Village. Last year was the first running of the event under its current name The Jimmy Devane Memorial Autocross. Jimmy

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PostedJul26

Cork City Mini Marathon

Posted by Bee For Battens in Events | 0 comments

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A lovely bunch of ladies will be taking part in the Evening Echo Cork Mini Marathon this sept 16th for Bee for Battens. We wish to extend our thanks and best wishes to you. Up to 10,500 registered last year! This year is expected to be even bigger, so if you wish to get involved then let me know and I will send you a Bee For Battens T Shirt and

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PostedJul17

Coming Up

Posted by Mai in News | 0 comments

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Our online survey has been extended because of the huge response to Radio & Print Media involvement over the past week. Please take the tmie to log on to our webpage and take the survey.
Along with this, as we do not receive any funding, we have many events on the go or in the making for you to get involved in so that we can continue to ra

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PostedJul17

Bee The Books

Posted by Mai in Fundraising | 0 comments

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A wonderful new concept by our very own Debora Tobin. Log on to her website to see this exciting Childrens book which will offer a percentage of sales to the Bee For Battens Charity. We love it, and im sure you will too :)

For orders please contact Debora directly as per the below details.
Address: Bee The Books
PO Box 365
Tralee,
C

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PostedJul10

Rare Disease Plan HAVE Your SAY

Posted by Bee For Battens in News | 0 comments

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Media Release July 10th 2012

Father Plea’s with Others Affected to Voice Their Concerns

The father of two children diagnosed with an Ultra Rare & Fatal Condition, is asking others affected by Rare Disease to urgently have their opinions heard in an online survey on Irelands first National Rare Disease Plan. (http://o

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APFS Harriers 5k fun run in aid of Bee for Battens & Barretstown at Dublin Airport
On August 26th join us for a charity 5km fun run at 12pm. All proceeds will be split equally between Bee for Battens and Barretstown, two great charities! The route will be a flat 5km road surface. Free parking available at the Boot Inn at the back of Dublin

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PostedJun21

Skydive Saturday 23rd June 2012

Posted by Mai in Events | 0 comments

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Veronika Nika Chapkova

 

Hi everyone, i am doing skydiving saturday for Bee For Battens...is there any chance that i can get 1 of yours bee for battens t-shirt so i could wear it on my day of jump...?? thanks..
any1 neer Sligo are more then welcome to come :)

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PostedJun21

Alcatraz Swim 26th August 2012

Posted by Mai in Events | 0 comments

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Julian O'Mahony  is working and living in the USA.
He works for Intel and he got an opportunity to go to the USA last year.
He will be over there for 2 years.
He phoned me at the week end because he is signed up to the Alcatraz
Swim on 26th August 2012.
He is doing it solo and would like to fund raise for Bee for
Battens/The

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A brilliant evening expected to be had by locals and visitors alike at the wonderful Carnige Arts Centre Kenmare on the 11th August 2012 at 8pm till late! Trad session for all you music lovers! Always a big favourite in Ireland and the beautiful town of Kenmare in Co. Kerry. All welcome :) See you there..

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PostedJun19

Rare Diseases News Vol1. Issue 3

Posted by Mai in News | 0 comments

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Please click on the link below to view the latest issue.

http://www.beeforbattens.org/downloads/1340119556Rare%20Diseases%20News%20Vol1.%20Iss3.pdf

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PostedJun10

1st Irish Rare Disease Plan, Consultation

Posted by Bee For Battens in Events | 0 comments

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Consultation on a National Rare Disease Plan


The Department of Health is currently developing the first National Rare Disease Plan for Ireland. This plan will make recommendations for enhancing the quality of life of people experiencing rare diseases. The plan will cover aspects of research, diagnosis, treatment and patient empowerment.

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PostedJun07

Madhatters Tea Party

Posted by Bee For Battens in Events | 0 comments

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The Angsana Madhatters Tea Party

At The Brehon, Killarney

Saturday, June 9

 

It’s time to dust off those hat boxes and don your favourite headpiece for The Angsana Madhatters Tea Party which takes place in The Brehon, Killarney on Saturday, June 9.

Tickets cost just €15 and all proceeds will be donated to Bee

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PostedApr19

New Partnership Announced With Just Eat.ie

Posted by Bee For Battens in News | 0 comments

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Bee For Battens Are please to announce a new partnership with Just Eat Ireland

Just-Eat.ie first opened it's virtual doors in 2008. Now, 4 years on, they are Ireland's leading online food ordering website. They operate out of headquarters in Dublin and have over 870 restaurants online throughout the country.

Please Go and Visit J

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PostedApr15

3rd Annual World Battens Free Family FunDay

Posted by Bee For Battens in Events | 0 comments

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Our Way of Saying Thanks to thise who support us!

 

This Year Ireland will mark our 3rd Annual World Battens Disease Awareness Day is a very special way. This years event is being held yet again at The Kerry Way Killarney, (from 12.00 : 19:00)

We had over 2000 people enjoy the event last year, from new born babies

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PostedMar29

Easter Eggs-travaganza

Posted by bee For Battens in Events | 0 comments

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Easter Eggs-travaganza@ the Killarney Outlook Centre

In aid of Bee for Battens

Saturday 7th April

12pm – 6pm

 

Celebrities will be in an abundance on Easter Saturday 7th April, at the Killarney Outlet Centre when it hosts a ‘Beat the Celebrity’ cycle race as part of a variety of f

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PostedMar20

2 New Jobs @BeeForBattens:

Posted by Tony Heffernan in News | 0 comments

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We are delighted to announce that the two positions which we are offering have had their deadlines extended to April 7th.

 

This is due to a technical issue with out mail system.

 

To find out more Click Here or go to our buzz / opportunities

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PostedMar15

Win 2 tickets to see Man Utd V Swansea in May

Posted by Bee For Battens in News | 0 comments

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Want to win two tickets to see Man Utd V Swansea at Old Trafford on May 6th? Click Here 

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PostedMar05

Amelia Returns To Ireland

Posted by Bee For Battens in News | 1 comments

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Amelia Ryczan , the four year old Batten Disease Sufferer from Carrickmacross in County Monaghan has returned to Ireland last Saturday morning after being refused participation is a clinical trial in New York.

The youngster's surgery was scheduled to take place at 12.30pm on Feb. 28th Last (Irish Time), however results from a blood test

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PostedFeb29

Final plans being prepared.

Posted by Bee For Battens in Liams Lodge | 2 comments

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We are delighted to say that the final drawngs for our respite centre are being completed. 

 

The latest addition to the facility has been a 450m2 (5000 sq.ft) education, visitor & research centre, aimed at providing hands on training to the medical profession, trainee nurses and those involved in the care giving to childre

Read more...

PostedFeb29

Company: Active Adoption Scheme

Posted by Tony Heffernan in Liams Lodge | 1 comments

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The Saoirse Foundation are now actively seeking support from the Public & Business community alike to get involved with the new respite centre for children affect by Rare Disease.

With 10 family rooms being built during each phase, (30 in total), we are asking for companies and social committees from across Ireland to come on board and s

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PostedFeb29

Get Involved : Donate your Time & Services

Posted by Tony Heffernan in Liams Lodge | 4 comments

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The Saoirse Foundation are now actively seeking support trade professionals & contractors to get involved with the new respite centre for children affect by Rare Disease.

We have 'pinched' the Niall Mellon Trust Model, which has seen hundreds and thousands of Irish tradesmen donated time, equipment & funds to

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PostedFeb29

Donate Building Materials etc..

Posted by Tony Heffernan in Liams Lodge | 2 comments

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We are asking anyone who is involved in the hardware sector or building supply services to please consider supporting our building project , whether it is a box or screws, windows or any part of the building materials which you can provide, we would love to hear from you.

 

We would invote you to contact us and let us know what you

Read more...

PostedFeb28

Amelia's Brain Surgery Cancelled

Posted by Bee For Battens in News | 1 comments

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The parents of a young Monaghan Girl are devastated following a last mintue decision from surgeons at the Weill Cornell hospital in New York, which has seen four year old Amelia Ryczans particpation in a medical treatment trial being suspended.

 

The four year old Monaghan girl travelled to the States last week with her mother

Read more...

PostedFeb22

Flora Mini Marathon Registration Open

Posted by Bee For Battens in Events | 1 comments

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Bee For Battens is delighted to be associated with this years event yet again and we hope to build on previous years successes.

This the 30th year of the Flora Women's Mini Marathon. This year's event will take place on Bank Holiday Monday 4th June 2012, which is what would have been Saoirse Heffernan'

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PostedFeb22

Volunteers & HELP Wanted!

Posted by Bee For Battens in Opportunities | 1 comments

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Bee For Battens is the National Charity For Batten Disease in Ireland, a part of the Saoirse Foundation, a registered non-profit charity in Ireland, based in Co. Kerry.

The charity operates throughout Ireland, helping families North & South of the Border.

We are always developing our charitiy to further our goals and make a real posi

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PostedFeb21

A Taste Of Kenmare

Posted by Bee For Battens in Events | 0 comments

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March 23rd will see a unique event taking place in Kenmare, four of Kenmare's finest Chefs will come together to host a wonderful dining experience highlighting their unique cooking talents at Sheen Falls Lodge to launch the upcoming Kenmare Food Carnival July 13-15th 2012 and also support Jack and Jill Foundation and Bee for Battens.

Th

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PostedFeb16

Amelia Heading to US for Surgery

Posted by Bee For Battens in News | 1 comments

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The family of young 4 year old Monaghan girl Amelia Ryczan are over-joyed following the news from United States, that their only daughter has been offered a second chance & participation in a potentially life extending medical treatment trial for Batten’s Disease sufferers currently being run at the prestigious New York Weil

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PostedFeb16

Johnny Cash , Walk The Line INEC

Posted by Bee For Battens in Events | 0 comments

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Bee for Battens is delighted to announce a new alliance with Killarney's INEC complex and to start this new initiative, we are pleased to announce that all profits from the upcoming " Walk The Line" Tribute with go directly to Bee For Battens.

Join Us For A Special Evening to Celebrate what would have Been Johnny's Cash'

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PostedFeb03

Update on 2012 Research Call

Posted by Bee For Battens in Research News | 0 comments

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In Follow Up to Our 2012 Call for Research Proposals into Batten Disease, please find below a link to a clarification document from the HRB.

 

HRB Clarification Letter Re Overheads  also note:

 

To find out about our call click here

 

regarding our contact details for the submissions; please note

Read more...

PostedJan29

B4B to attend NCL 2012, London

Posted by Bee For Battens in News | 0 comments

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NCL2012 is the 13th International Conference on Neuronal Ceroid Lipofuscinosis (Batten Disease). An NCL conference of this type has been held approximately every other year on alternate sides of the Atlantic.

 This is the only forum that brings together those with interests in basic science and clinical care for this group of devastatin

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PostedJan18

2012 Killarney Women's Marathon Sept 10th

Posted by Bee For Battens in Events | 0 comments

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Killarney Women's Mini Marathon is a 10k event through Killarney National Park. So we are looking for people to Walk Run or Jog for Bee For Battens. A timing chip will also be available for you to register your run Time

 

The Course Route will take you through the magnificent Killarney National Park a

Read more...

PostedDec21

VW, Another New Partner for 2012

Posted by Bee For Battens in Sponsorship | 0 comments

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Bee For Battens is delighted to announce that we have teamed up with Volkswagen for 2012. This is great news for our little charity and we are hoping to be offering some very special opportunitiies for our supporters.

Our Partnership with VW is through Tom Harvey Motors in Thurles, Co Tipperary, who in 2011 became a supporter of the Bee for

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PostedDec12

Designing a Plan for Drug Discovery

Posted by Bee For Battens & BDIA in News | 0 comments

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Designing a Plan for Drug Discovery in Rare Pediatric Neurodegenerative Disease

By Danielle Kerkovich, Ph.D., and Amy Drew

 

 

There are currently no cures for neurodegenerative diseases, including Batten disease, a rare and fatal disorder affecting young children. While researchers have made headway in preventing

Read more...

PostedNov30

Sean O Connor, A New Member of Bee for Battens

Posted by Bee For Battens in News | 0 comments

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Bee For Battens  would like to introduce you to Sean O Connor, who along with is Mom Majella, Dad Gary & Little brother Odhran have recently joined Bee for Battens.

Sean who is a proud supporter of the boys in green, lives in Edenderry Co Offaly and suffers from Batten Disease CLN8, a varient strain of the disorder. Sean is ju

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PostedNov28

National Child of Courage Award : Liam Heffernan

Posted by Bee For Battens in News | 0 comments

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We had a great night last Saturday in Limerick , where Shay Kinsella of Share A Dream Ireland, presented Liam Heffernan with a National Child Of Courage Award 2011.

Liam 3, who sufferers from Batten Disease has had a difficult year, having lost his only sibling, Saoirse (5) in January from Batten Disease, Liam also became the Worlds Youngest

Read more...

PostedNov22

2012 Call For Research Funding Proposals

Posted by Bee For Battens in News | 1 comments

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Bee For Battens, The Saoirse Foundation is the Irish National Charity For Batten Disease.

It supports those directly affected by the disease, their familes whilst providing advice , information and support to medical professionals, carers and community agencies. Formed in March 2010, the charity is  proactive in Ireland and abroad and i

Read more...

PostedNov22

2012 Call For Research Funding Proposals

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens, The Saoirse Foundation is the Irish National Charity For Batten Disease.

It supports those directly affected by the disease, their familes whilst providing advice , information and support to medical professionals, carers and community agencies. Formed in March 2010, the charity is  proactive in Ireland and abroad and i

Read more...

PostedNov18

Signed Dublin Jersey : Blind Auction

Posted by Bee For Battens in Events | 0 comments

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For All Dublin GAA fans!,here is our charity fundraiser!

After Dublin becoming the All Ireland Football Champions for 2011, we have an opportunity for you to own a piece of history, 

a Framed and signed football Jersey! this Jersey was donated to us by Irish Comedy Legend, PJ Gallagher, we are offering this special piece of GAA hi

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PostedNov16

Summer School a Huge Success

Posted by Bee For Battens in Events | 0 comments

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Report from Alan Bates of Bee For Battens regarding this years Summer School part sponsored by "Bee For Battens"

The ‘Foyle Parents and Friends Association’ has been supporting individuals with physical and learning disabilities as well as their parents and carers since 1963!  For the past 4 years however they have

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PostedNov14

Monaghan Battens Child Gets 2nd Chance

Posted by Bee For Battens in News | 0 comments

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Bee For Battens are absolutely delighted to announce that 4 year old Amelia Ryczan from Carrickmacross Co Monaghan is to return to the Us to take part in a treatment trial.

Amelia, who previously attended the Weill Cornell facility in New York, earlier this year,   was refused participation in the treatment trial, du

Read more...

PostedNov01

A Fox For A Fiver? Win a New Car!

Posted by Bee For FiverBattens in Events | 0 comments

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Bee For Battens in association with VW Ireland & Tom Harvey Motors are offering you the chance to win a 2011 brand NEW VW Fox for just a fiver!

To enter all you have to do is donate just 5 euros , & you can enter as many times as you wish. ENTER HERE!

With the campaign subject to 2300 entries we are hoping that this recession bus

Read more...

PostedOct28

New Sponsorship Partner : Perigord Group

Posted by Bee For Battens in Sponsorship | 0 comments

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Bee For Battens are delighted to announce that following a meeting today between Alan Leamy , CEO of Perigord Group & Tony Heffernan, that we have entered into what we hope will be a long fruitful partnership with our New Sponsor, Perigord Group.

The Perigord Group are a global production services agency providing artwork, bran

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PostedOct17

B4B Heading to #BrandsConf in NYC!

Posted by Bee For Battens in News | 0 comments

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#BrandConf is the world largest conference for marketing and Branding. This year  #BrandsConf will be taking place on November 9, 2011 at the 92nd Street Y (1395 Lexington Avenue) in New York City.

#BrandsConf explores the “Humanization of Brands” and the underlying effects this is having on business.

Since the birt

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PostedOct17

Humpty Dumpty Duathlon Oct 29th Kenmare

Posted by Bee For Battens in Events | 0 comments

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Kenmare town is fast gaining a reputation as Ireland’s fittest town. On the October weekend, Saturday Oct 29th Kenmare will host its third duathalon, a 40km Cycle and a 6km Run. It is open to everyone, individuals and relay teams. Funds raised from the event will be donated to Kenmare Underage Rugby teams and Kenmare Hospital De

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PostedOct14

Vote For Us, 2012 Manor West Charity of The Year

Posted by Bee For Battens in News | 0 comments

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We have been shortlisted for Manor West Charity of the Year 2012 with the winner being announced at Manor West’s 10th Birthday Celebrations on Saturday 5th November 2011.

If we win it could mean an additional €20,000 for our fundraising campaign. Please vote for us by visiting the Manor West Facebook Page

Read more...

PostedOct02

DCU Drama, Our latest partnership!

Posted by Bee For Battens in News | 0 comments

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Bee For Battens is absolutely delighted to announce our latest partnership with DCU Drama.

 

Based in Dublin City Univiversity, DCU Drama is one of DCU's longest-running and most successful societies. The exact origins of the society are now lost in the mists of time, but they've been active since at least the lat

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PostedSep26

Ring Of Kerry 112' Run in a Day

Posted by Bee For Battens in Events | 2 comments

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 On October 15th, Paul Gosney, a father of two, who lives in Beaufort Co Kerry will undertake the largest challenge of his life and run around the Ring of Kerry in a single day for his local charity, Bee for Battens.

The run, which is over four marathons long and totals 112 miles, will start at 6am on Saturday from Killarney Co Kerry. H

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PostedSep14

New Partnership With DCU Students Union

Posted by Bee For Battens in Fundraising | 0 comments

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Bee For Battens are delighted to announce that we have been selected by Dublin City University Students Union as their National Charity Of Choice For 2011/2012.

The Joint Announcement comes as the university is opening up for a brand new year, welcoming students back after the summer break as well as welcoming new students to third level edu

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PostedSep11

The Handsome Little Fox Picnic Night, Sept 24th

Posted by Bee For Battens in Events | 0 comments

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WHEN: Saturday Sept 24th,

WHERE: South Bank Studios , Dublin 8. (27 New Row South)

TIME: Doors from 7pm.

 

Join us for what will be a night to remember,  a night with a difference. Great craic and all for a good cause! Come, Share, Enjoy & Be Merry!


TICKETS: http://www.eventelephant.com/thehandsomelittle

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Bee For Battens are pursuing the developement of a state of the art respite centre for children with Rare Disease. The charity have entered in a contract to purchase a 5 acre site located less than a mile from Kerry General Hospital.

The centre, will be the first of its kind in Ireland and only one of a handful in Europe. The facility which

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PostedSep01

A Fiver For a FOX? Your Chance to Win a Car!

Posted by Bee For Battens in Events | 0 comments

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Bee For Battens in association with VW Ireland & Tom Harvey Motors are offering you the chance to win a 2011 brand NEW VW Fox for just a fiver!

To enter all you have to do is donate just 5 euros , & you can enter as many times as you wish. ENTER HERE!

With the campaign subject to 2300 entries we are hoping that this recession bus

Read more...

PostedAug29

First Steps Into Research Announced.

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens is pleased to announce that it is taking its first steps into the field of Batten Disease research, entering into  a project partnership with our USA based affiliated charity; The Batten Disease Support & Research Association .

The two projects will take place in different research institutes in the United State

Read more...

PostedJul29

EUCERD 2011 report on Rare Disease Activities

Posted by Bee For Battens in Research News | 0 comments

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The Scientific Secretariat of the European Union Committee of Experts on Rare Diseases issued the publication of the "2011 Report on the State of the Art of Rare Diseases Activities in Europe".  This report covers activities up to the end of 2010. 

The report is composed of 3 parts which are now available via the EUCERD

Read more...

PostedJul29

InteriorsDirectory.com New Fundraising Partnership

Posted by Bee For Battens in Events | 0 comments

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Bee For Battens & The InteriorsDirectory.com are delighted to announce a new fundraising initiative in support of our charity, 'Bee For Battens' (www.beeforbattens.org).


If you're a registered user of InteriorsDirectory.com (including of course, users of our free account) and you refer a friend who registers with us, (For

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PostedJul13

2400 MILE Run Across US Completed for BATTEN DISEASE

Posted by bee For Battens in News | 0 comments

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On last Saturday afternoon, 27-year-old Noah Coughlan, of Vacaville, Calif., ran toward Atlantic Beach -- the final destination on a journey that began in February on California's Pacific coast.

After running over 2,400 miles, about 25 to 30 miles a day, Coughlan waded ankle deep into the Atlantic Ocean.After over 130 days of running whi

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PostedJun22

Bee For Battens & Live Horse Racing

Posted by Bee For Battens in News | 0 comments

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We are delighted to announce that Bee For Battens has teamed up with TVM to create further awareness of Batten Disease from your local horse racing track.

TVM provide live streaming of all horse racing events in Ireland and we are very grateful to have our logo on the information TV channel time clock during TV coverage of each race event.

Read more...

PostedJun18

Charity Shoot 31st July Co. Clare

Posted by Bee For Battens in Events | 0 comments

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We are delighted to invite you to a Charity Clay Pigeon Shoot to be Held in Ruan Shooting Grounds County Clare.

The Event will be held on July 31st and will start at 12 noon. Last Entries at 5pm

 

15 Bird D7L

4 Sporting Lay Outs

Perpetual Cups

1st prizes in each event plus a High Gun Prize

 

To Register

Read more...

PostedJun18

Killarney Womens Mini Marathon Sept 10th

Posted by Bee for Battens in Events | 0 comments

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Killarney Women's Mini Marathon is a 10k event through Killarney National Park. So we are looking for people to Walk Run or Jog for Bee For Battens. A timing chip will also be available for you to register your run Time

 

The Course Route will take you through the magnificent Killarney National Park and into Killarney

Read more...

PostedJun08

Kenmare Golf Classic Friday 29th July 2011

Posted by Bee For Battens in Events | 0 comments

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Kenmare Golf Club Bee For Battens Charity Golf Classic

 

This is the second Annual Golf Classic being held for Bee for Battens at the Kenmare Golf Club. This year will build on last years success and we are hoping for a large turnout again. This years event is kindly sponsored by McCarthy Sports, Main Street, Bantry

3 person tea

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PostedJun08

National Rare Disease Steering Group

Posted by Bee For Battens in News | 0 comments

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Bee For Battens is proud to announce that Tony Heffernan, founder of Bee For Battens has been appointed as the Parent & Patient Representative on the Department of Healths Steering Group For Rare Disease.

The group which will work with the Deptartment of Health in creating and developing  a 5 year national plan on rare disease. This

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PostedJun06

World Battens Day 2011, A Great Success

Posted by Bee For Battens in News | 0 comments

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Over 2000 people joined Bee For Battens in celebrating World Battens Day on June 4th in the Kerry Way.

With a huge line up of music and entertainment for all ages, there were lots of smiling faces at the event which ran for over 8 hours. 

Lots of children dressed up as Bee's and our special judge, Willie Big Bang Casey presented

Read more...

PostedMay28

Heffernans Heading Home From NY

Posted by Tony Heffernan in News | 5 comments

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Batten's Disease sufferer Liam Heffernan will today depart the Us with his parents, Tony & Mary.

Liam, (2) is the only son of Tony & Mary Heffernan, who on May 3rd, officially became the World’s youngest ever child to receive the pioneering brain surgery, as part of a medical treatment trial,

which could potentially sa

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PostedMay17

Liam Making Excellent Progress in NY

Posted by Bee For Battens in News | 1 comments

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Liam Making Excellent Progress  in NY

Young Liam Heffernan, from Castledrum, Keel in Co Kerry, who underwent pioneering brain surgery just two weeks ago, at the prestigious Weill Cornell University Hospital in New York, has really impressed his medical team with his post-surgery recovery.

Liam, (2) is the only son of Tony &

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PostedMay10

Life after Santa Ponsa 5th June 2011 8pm

Posted by Irene Carey in Events | 0 comments

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Starring Pakie O’ Callaghan & Frank Twomey. This hilarious comedy is coming to Kenmare to  Pobaiscoil Inbhear Sceine all in aid of Bee for Battens & Kenmare GAA.
It promises be a fantastic night!!

In this latest episode in the life of the Murphy families

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PostedMay07

Dingle Marathon September 3rd

Posted by Bee For Battens in Events | 0 comments

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Why not run Irelands Most Scenic Marathon in aid of Bee For Battens
A half and full marathon around the spectacular Dingle peninsula.

 

starting at 9am on September 3rd.

The full marathon travels 26.2 miles around the spectacular Dingle peninsula. It is a challenging run and is not to be under estimated. There are a number of

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PostedMay05

Liam Discharged From Hospital

Posted by Tony Heffernan in News | 13 comments

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Liam's recovery after his gene transfer surgery on Tuesday has been remarkable, so much so, that Liam's medical team have permitted the 2 year old to be discharged from the main hospital. Liam will remain at the hospitals guest facility, located within the hospital complex.

Liam has been up and about all day and has been very stable

Read more...

PostedMay03

Liam surgery Update

Posted by Tony Heffernan in News | 3 comments

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As we remain in the family lounge outside the operating theatre in NYC Weill Cornell Medical Centre, Our son Liam has been undergoing brain surgery for the past 4 hours in his battle against Battens Disease.

Te Latest report from the OR is that Liam is doing fine, he is in good shape and has received the first dose of Gene therapy through th

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PostedMay02

1 day to go for Liam's Surgery

Posted by Tony Heffernan in News | 0 comments

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With just over 24 hours remaining prior to Liam going for Brain Surgery, the Little man is going to have a busy and somewhat traumatic day for himself.

In the next hour or so Liam will stop taking fluids, he has already stopped 'eating' since midnight ahead of his pre-operation MRI/MRS scan, lumbar puncture and final medical checks.

Read more...

PostedMay02

Clear of MRI : Less than 18 hours to Surgery For Liam

Posted by Tony Heffernan in News | 11 comments

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The Last of the Pre-Op Screening and testing has been completed and Liam has only 18 hours to go to brain surgery. He is still recovering from a busy morning and he is making great progress. His strength is standing to him and lets hope tomorrow goes well.

 

Liam will have a quiet afternoon / evening and will be having a bit of fun

Read more...

PostedMay01

Juvenille NCL / Battens Disease News

Posted by Bee For Battens in Research News | 0 comments

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21. April 2011

 

FRANKFURT, Germany. It is a rare disease with devastating consequences: Around first grade, the children start experiencing vision impairments, which two to three years later progress to complete blindness. This is the first indication of a progressive destruction of brain cells. Later on, the patients experience ha

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PostedApr30

Update on Liam in NY!

Posted by Tony Heffernan in News | 9 comments

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Day 3: Liam has had a busy couple of days and will soon be finishing a 24 EEG exam and monitoring session for seizure activity.

This is usually a very traumatic time for Liam but we tried to take away the pain for him a little by adding to his collection of Giraffes, this fine example courtesy of FAO Schwartz on 5th Ave New York Ci

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PostedApr28

Liam to visit NYC hospital today

Posted by Tony Heffernan in News | 0 comments

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Liam has been in good spriits since he arrived in New York, and today he will enter the hospital with Mom & Dad , where the consent process and paperwork around the entire procedure will take place.

Liams health is still very good, although he did pick up a bit of a cough, which will hopefully clear soon. His bodyclock is still on I

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PostedApr25

2 yo Liam Heading To New York

Posted by Bee For Battens in News | 5 comments

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A 2 year old Irish boy, Liam Heffernan, from Castledrum, Keel in Co Kerry, who suffers from Batten’s Disease, will depart from Dublin Airport tomorrow afternoon to participate in a pioneering medical treatment trial in the United States which could give the youngster his only chance of life.
 

Liam will travel with his parents t

Read more...

PostedApr18

May 28th Gala Fundraiser Thurles Greyhound Stadium

Posted by Tony Heffernan in Events | 0 comments

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A Gala Fundraising evening in aid of the Bee For Battens Charity will take place on the 28th May 2011, in Thurles Greyhound Stadium, Co Tipperary.

The 11 card race event will see dogs from all over the country racing in what is going to be a great night of entertainement.

Tickets are available from Kieran Monaghan : 086 2698727,

Each

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PostedApr09

"A True Story" On You Tube

Posted by Tony Heffernan in News | 2 comments

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Bee For Battens has launched a new You Tube Movie to highlight the Fatal disorder : Batten's Disease. This is the latest offering by our little charity to create awareness using social media and our online campaign . The video is a just 47 seconds long but we hope you like the quality!

The video is a tribute to Saoirse Hefferna

Read more...

PostedApr05

Tea & Tubridy from Killarney!

Posted by Bee For Battens in News | 0 comments

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This morning , the Tubridy Show from Irelands largest Radio Station 2FM will be broadcast LIVE from Miss Courtney's Tea Rooms in Killarney

Tony Heffernan will be joining Ryan on the show to catch up on how his son Liam is doing prior to his trip to the US for Pioneering Brain Surgery Next month.

Tony who appeared last year on The Lat

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PostedApr03

Monaghan Girl heading Stateside

Posted by Bee For Battens in News | 1 comments

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Bee For Battens is pleased to announce that it is providing full financial support to send Battens Disease sufferer Amelia Ryczan and her family to New York to undergo assessment to see if she will qualify to participate in a medical treatment trial.

The assessment which will be held at the Weill Cornell Facility on New York on the 14th and

Read more...

PostedApr02

Robbies Rainbow Quilts

Posted by Bee For Battens in Special Gifts | 1 comments

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Robbies Rainbow Quilts...........made with love!

 

Everyone has a story!!
 

Robbies Rainbow Quilts can transform your old favourite baby clothes into special keepsakes such as quilts and cushions. Every quilt and cushion is individual and unique, encapturing all of your precious memories.

 

Why store your old

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PostedApr02

The Jewellery Tree

Posted by Bee For Battens in Special Gifts | 0 comments

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The Jewellery Tree was founded and created in 2009 by me, Lisa Clinch. After the birth of her third daughter in April 09, Lisa decided to do something creative just for herself. So Lisa went to the UK and did several courses in working with precious metal clay, and realised that she not only loved designing and creating new p

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PostedMar31

World Batten's Disease Awareness Day Ireland

Posted by Tony Heffernan in Events | 1 comments

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This Year Ireland will mark its second official World Battens Disease Awareness Day is a very special way. This years event is being held at The Kerry Way Killarney, (from 12.00 : 19:00)

Entry is free for all the family. The event will feature lots of live bands including traditional Irish jigs and reels, Kilkenny's Keltic Kats , SCUBA

Read more...

PostedMar22

Irish Battens Child heading to US for Treatment.

Posted by Bee For Battens in News | 4 comments

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Liam Heffernan (2), from Castledrum, Keel, Castlemaine, in Co Kerry, has been invited to participate in a pioneering second generation human medical trial which has recently commenced at the prestigious Weill Cornell University Hospital in New York.


The invitation for Liam has come exactly 9 weeks after his sister Saoirse (5) passed away

Read more...

PostedMar01

World Rare Disease Day

Posted by Bee For Battens in News | 0 comments

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Bee For Battens played its part in acknowledging World Rare Disease Day yesterday by joining the Genetic & Rare Disorders Organsiation .

The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or

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PostedMar01

Facebook Challenge

Posted by Bee For Battens in Events | 0 comments

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Bee For Battens has received a magnificant oppourtunity to raise 50,000 euro simply by asking people to join its social network Face Book group .

A wealthy Munster based business person , who wishes to remain anonymous, has pledged the large sum once the charity reaches a membership of 50000, so please spread the word and give us 10 seconds

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PostedMar01

Winner of Yacht

Posted by Bee For Battens in Fundraising | 1 comments

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Congratulations to Mrs Margaret McPartland of Dundrum, Co. Dublin who won a twenty seven foot Jeanneau Fantasia Yacht in our latest fundraising competition.

Margaret and her husband John are pictured here receiving the keys to the boat from Mary & Tony Heffernan from Bee For Battens.

 

We would like to wish Margaret &am

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PostedFeb21

Bereavement Support Affilaition

Posted by Bee For Battens in News | 0 comments

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Bee for Battens is delighted to announce an affiliation with Anam Cara, who will provide the bereavement support for our charity.

 

Anam Cara Parent Bereavement Support
Anam Cara Parent Bereavement Support was formed to address the needs of bereaved parents and families throughout Ireland. The loss of your child is like no other a

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PostedFeb02

Paris To Geneva Cycle, 18th Sept 2011

Posted by Bee For Battens in Events | 0 comments

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Paris to Geneva - 18 September 2011

Bee For Battens are pleased to announce a cycle adventure that will be sure to fulfill the expectations of amatuer and professional cyclists alike whilst rasing funds for a great cause.


 
This challenging ride covers 540km in four days to link together these two wonderful cities.

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PostedFeb01

Doante to Win, January Winner!

Posted by Bee For Battens in Fundraising | 0 comments

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Congratulations to John Murphy from Tallaght Dublin 24 who won a weekend break for two in January's Doante to Win Competition.

 

Check out this months draw where you could win a 2011 Munster Rugby Team signed Jersey!

Read more...

PostedFeb01

Winner of Motor Bike!

Posted by Bee For Battens in Fundraising | 0 comments

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Congratulations to Katie O Sullivan of Cliff Callinafercy Milltown Co Kerry who won a Honda CB 750cc Custom Exclusive in the Bee For Battens Motor Bike Draw.

 

Bee For Battens would like to thank all of those who supported this draw and a huge thanks to Mike & Mary O Callaghan from Cork who donate the beautiful Motor Bike

&n

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PostedJan18

Saoirse Heffernan Passes Away

Posted by Bee For Battens in News | 31 comments

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Little five year old (5) Saoirse Heffernan has peacefully passed away in the arms of her Parents Tony & Mary Heffernan, at 1am this morning following a battle for life against Batten’s Disease at the family home in Keel in Co Kerry.

 

Saoirse who enjoyed a peaceful Christmas with her family had some serious complications s

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PostedJan14

Willie " Big Bang For Battens" Casey

Posted by Bee For Battens in News | 0 comments

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WE are thirlled to announce that European Boxing Champion Willie "Big Bang" Casey is an offical Patron of the Charity!

Willie who has been a supporter of Bee For Battens from the begining,  has already conquered Irelands Highest Mountain , for Irelands Highest ever boxing match to promote Battens Disease has also worn the

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PostedJan10

Banish The Bulge For Battens 2011

Posted by Tony Heffernan in Events | 0 comments

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Hi All

For the first time ever I am going to try and get myself some bit fit, so this year I am going to try and "Banish The Bulge For Battens"

A lot of us have no will power whatsover and I am one of those, especially when it comes to losing weight so I am using the charity as my motivation.

So many people have got and

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PostedJan09

Recycle Your Old Phone

Posted by Bee For Battens in Events | 0 comments

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Were you lucky enough to get a new Mobile Phone?  Then why not recycle your old phone for charity? Your old phone is a very valuable to us and we use all of our funding raise from recycling to fund research into Battens Disease!

WHAT TO DO!

 

Simply Send Your old Mobile Phones to:

Bee For Battens

Casteldrum

Cast

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PostedJan04

Bee For Battens To Support Jack & Jill

Posted by Bee For Battens in News | 0 comments

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Bee For Battens, The Saoirse Foundation To Help Fill the Pail!

Even though there are only a handful of families in Ireland who have children affected by Battens Disease, Bee For Battens, The Saoirse Foundation Charity has decided to step in to support Irish Battens Disease Sufferers and their families following a decision by the Jack &

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Scots scientists have helped to unlock a secret of the brain that could lead to drug treatments for millions of people living with conditions such as Alzheimer’s Disease and autism.

Scientists from Edinburgh University and the Wellcome Trust Sanger Institute in Hinxton, Cambridgeshire, discovered a collection of 1461 proteins that acco

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PostedDec17

Bee For Battens Joins IPPOSI!

Posted by Bee For Battens in News | 0 comments

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We are please to announce that Bee For Battens has become the latest member of IPPOSI, the Irish Platform for Patient Organisations, Science and Industry.

IPPOSI is a unique partnership of Patient Groups/Charities, Science and Industry on the island of Ireland. As a patient led partnership, the platform provides a structured way of

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PostedDec10

Medical Research Charities Group

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens is delighted to be part of the Medical Research Charities Group, Our Charity joined the group in late 2010 and is commited to pushing for more research into Battens Disease and other Rare Diseases.

We will proactively push to give Rare Diseases a larger voice and the Medical Research Charities Group is an idela platform.


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PostedDec09

New Research Partner Bon Secours!

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens are delighted to announce that we have received funding from Bon Secours Hospital to support some research into Battens Disease in 2011. We are delighted to be approached by such a well respected medical organisation such as Bon Secours and look forward to working very closely with them over the coming years.

 

More

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Bee For Battens supporters will take to the skies on the June bank holiday weekend in  June 2011, to celebrate World Battens Disease Awareness  As our first World Battens Disease Awareness day parachute jumps went so well in 2010 we have been inundated with requests to repeat it this year.

Our Sky Divers will also be landing i

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PostedNov24

New Christmas Single Launch Nov 26th

Posted by Bee For Battens in Fundraising | 1 comments

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Liz Madden is pleased to announce the release of her new Song   HAPPY CHRISTMAS CHRISTMAS TREE

 

Christmas Single in aid of

 

Variety Club of Ireland The Children’s Charity

&

Bee for Battens The Saoirse Foundation

 

Download Here 

Written by Kathleen Comerford

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PostedNov23

UCC A Summer Evening On the Quad 10th June 2011

Posted by Bee For Battens in Events | 0 comments

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The 6th annual summers eveing on the Quad will be held in aid of Bee For Battens and we are delighted to be involved with UCC, an Garda Siochana and RTE for this magnificant concert.

The exact line up for the event will be announced shortly, keep tuned and tickets will be on sale in the Near Future, please buy your tickets early to avoid di

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PostedNov14

Logistics Partner

Posted by Tony Heffernan in News | 0 comments

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Bee For Battens are delighted to announce that we have teamed up with Fastway Couriers Ireland.

 

We are delighted to be partners with Ireland fastest growing Courier Network, with almost 400 vehicles zipping across the country we hope this will streghten Bee For Battens Awareness Campaign For Battens Disease!

 

http://

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PostedAug20

New Website from Splash

Posted by Stephen O'Sullivan in Kerry | 0 comments

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Vivamus lacus nunc, iaculis vitae elementum faucibus, dapibus rutrum dolor. Sed vulputate bibendum

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PostedAug12

Sponsorship Oppourtunities

Posted by Tony Heffernan in Sponsorship | 1 comments

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We are always looking for oppourtunities to promote Battens Disease and Awareness of this little known disorder. We welcome any partnership or support which you may wish to offer, either short term, long term or on a once off occasion.

Our charity is purely non profit and volunteer based, registered in March 2010 , post Charities A

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PostedAug12

POST-T-PACK

Posted by Tony Heffernan in Recycling For Research | 0 comments

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We have launched a New Recycling Initiative Our “POST-T-Pak”.

Jerry Dwyer Lee Strand, Tony Heffernan Bee for Battens & Kerry Football Legend Daragh O Shea launching the New Recycle Campaign at Lee Strand.

 

From June 14th 2010, we are delighted to announce a Pilot Project, that in co-operation with LEE STRAN

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PostedAug09

Parachute Jump!

Posted by Skydive Ireland in Fundraising | 1 comments

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If you’ve ever dreamed of doing a parachute jump, why not do it in aid of Bee For Battens, The Saoirse Foundation?

You can do a tandem jump from 10,000 feet – strapped to a trained and experienced instructor. Skydive Ireland does jumps once a month from Kerry Airport and other Airports throughout Ireland. All jumpers are insured

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