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BeeForBattens

#WorldBattensDay Creating Awareness, an inherited neurological condition thats kills kids! Join the fight for life @ BeeForBattens.org about 18 hours ago via Twitter for Android
@PiperHawk good morning Sir hope your day goes well about 18 hours ago via Twitter for Android in reply to PiperHawk
loc8code Irish Coast Guard issues advice to the public for June Bank Holiday and summer water-safety campaign fb.me/1Wz7UDWxV about 19 hours ago via Facebook Retweeted by BeeForBattens and 1 other
MFJulie #specialsaturday We are holding a 1 day COMPLEX #epilepsy conf for health care professionals 12th Oct Midlands youngepilepsy.org.uk/news-and-event… about 18 hours ago via web Retweeted by BeeForBattens and 2 others
@VainMann thanks Fergal 4:21 PM Jun 1st via Twitter for Android in reply to VainMann
good night folks. Weather looking wet for tomorrow but you never know... #worldbattensday 4:19 PM Jun 1st via HootSuite
@SweetSoaps not too bad . You? getting ready for world batten disease day tomorrow! 3:41 PM Jun 1st via Twitter for Android in reply to SweetSoaps
@suzybie your #onfiretonight 3:39 PM Jun 1st via Twitter for Android in reply to suzybie
lecraic Who set up the continuity #latelate with the superfluous 50? Hard to track 2 tags. 3:37 PM Jun 1st via Twittelator Retweeted by BeeForBattens
SweetSoaps “@HuffingtonPost: Facebook forced to let users vote on privacy changes huff.to/LOPbXB” (ha ha ha 3:37 PM Jun 1st via Twitter for iPhone Retweeted by BeeForBattens
@Jim_Sheridan have a great one, well desereved #latelate50 hi to all ! 3:18 PM Jun 1st via Twitter for Android in reply to Jim_Sheridan
and the last time we were on the #latelate Sinead O Connor was left in the shadows when our Liam stole the show withhis dinosaur #latelate50 3:14 PM Jun 1st via Twitter for Android
@Pamelalucey1 hope the Rain keeps away tomorrow! 2:53 PM Jun 1st via HootSuite in reply to Pamelalucey1
twink looks like she fell through the display window in Waterford Crystal #LateLate #LateLate50 2:38 PM Jun 1st via Twitter for Android
@GoogleMcGurgle I was told that our second child was also diagnosed & was going to die from #BattenDisease. 2010 was a shite year! 2:32 PM Jun 1st via Twitter for Android in reply to GoogleMcGurgle
@ValOD1 @funkygoddessirl sorry folks my mistake . Sad loss RIP G Ryan 2:29 PM Jun 1st via Twitter for Android in reply to ValOD1
I remember Gerry Ryan well, I was due to talk with him on March 19TH 2010, that day was my first appearance on the #latelate #BattenDisease 2:28 PM Jun 1st via Twitter for Android
@GoogleMcGurgle sorry your correct 2:24 PM Jun 1st via Twitter for Android in reply to GoogleMcGurgle
Tomorrow is World Battens Day this year will see so so many children die this year. please think about helping us make a difference & creat… 2:13 PM Jun 1st via LinkedIn
biking4battens youtube.com/watch?v=LG2k3X… A fantastic speech by @ellenblets about her daughter with Batten Disease. 4:31 AM May 28th via web Retweeted by BeeForBattens and 4 others

Name Tony Heffernan a DAD
Location Kerry, Ireland
Web http://www.beefor...
Bio Founder & CEO of Bee For Battens The Saoirse Foundation. Working to try & save the lives of kids with Battens & Other Rare Diseases, Are you @RAREaware!