The Buzz Blog - News
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
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
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.
PostedAug26Posted by Ramona in News | 0 comments
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
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).
We Need YOU : Get Involved in the The Saoirse Foundation & TCD On Rare And Genetic Diseases QuestionnairePosted by Ramona Keogh in News | 0 comments
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
PostedMay04Posted by Ramona in News | 0 comments
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
PostedFeb28Posted by Tony Heffernan in News | 0 comments
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
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
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
PostedOct27Posted by The Saoirse Foundation in News | 2 comments
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
“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
PostedMay01Posted by Bee For Battens in News | 0 comments
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
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
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.
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: email@example.com.
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.
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
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.
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@
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
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
http://www.youtube.com/watch?v=gwdtiAxlD2c&list=UUvOwvxlGqd6fmUjOw8ptqdw&index=1&feature=plcp Interview WithMarie Therese Mc Cartin supporting Bee for battens. Well done :)
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
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
Please click on the link below to view the latest issue.
PostedApr19Posted by Bee For Battens in News | 0 comments
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
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
PostedMar15Posted by Bee For Battens in News | 0 comments
Want to win two tickets to see Man Utd V Swansea at Old Trafford on May 6th? Click Here
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
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
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
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
PostedDec12Posted by Bee For Battens & BDIA in News | 0 comments
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
PostedNov30Posted by Bee For Battens in News | 0 comments
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
PostedNov28Posted by Bee For Battens in News | 0 comments
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
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
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
#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
PostedOct14Posted by Bee For Battens in News | 0 comments
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
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
PostedJul13Posted by bee For Battens in News | 0 comments
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
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.
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
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
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
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 &
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
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
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.
PostedMay02Posted by Tony Heffernan in News | 11 comments
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
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
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
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
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
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
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
PostedMar22Posted by Bee For Battens in News | 4 comments
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
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
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
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
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
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 &
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
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!