A JUNIOR Infant student from Solas Chríost in Belgard has beenchosen as one of the young faces ofCystic Fibrosis Ireland – in a positive campaign which aims toinvolve and promote those livingwith the disease in Ireland.

Saoirse Brophy was diagnosedwith Cystic Fibrosis after she wasbrought to Our Lady’s Children’sHospital Crumlin with suspectedswine flu three years ago.

Saoirse’s mam Siobhan told TheEcho how her little girl had severeflu-like symptoms and had diffi-culty breathing – but Cystic Fibro-sis was the last thing on her mind.

Cystic Fibrosis (CF) is an inher-ited chronic disease that primarilyaffects the lungs and digestive sys-tems of about 1,200 children andadults in Ireland – which causes thebody to produce a thick and stickymucus which clogs the lungs andleads to life-threatening lung infec-tions.

Siobhan said: “After we broughtSaoirse to Crumlin, we were sentto Tallaght Hospital which has afantastic, dedicated CF unit.

“In the early days, learning thatSaoirse had CF was a huge shock

and I didn’t really know anythingabout the illness.

“However, now it isvery manageableand there is ahuge team be-hind Saoirse –it’s not just meand my family,she has dieti-cians, nurses,physios and otherspecialists basedin TallaghtH o s p i t a lwho are allthere tosupport her.

“ F a m i -lies are alsogiven a spe-cial num-ber if theyneed in-formationor advicefrom anyof the staffat Tallaght.”

Each morn-ing Saoirsemust under sixd i f f e r e n tprocesses, in-cluding a mix ofm e d i c a t i o n ,

physio and inhalers, to open herairways and set her up for the

day ahead. “Once Saoirse gets her

morning treatment she’soff for the day and

ready to do what-ever it is that littlefive-year-olds do,”Siobhan said.

“It is totallymanageable but the

downside is that acold to Saoirse

could mean twoweeks in hos-pital so I haveto watch her –

and make sureshe is notaround otherkids who aresick.

“ H o w -ever, sheis wellable for

mainstreams c h o o l ,

thanks to vitalhelp from her

teacher Ms Kee-gan – who givesSaoirse some im-portant enzymesbefore she eats

her break and lunch.”Describing her daughter as a

“divil on the inside and angel onthe outside,” Siobhan said that shespotted an invitation on Facebookfrom CF Ireland for positive im-ages and stories from CF patients –so she submitted a picture ofSaoirse dressed as a nurse.

Ciara Enright, of CF Ireland,told The Echo: “Saoirse’s photowon the heart of our followers sowe decided to invite her in for aphotoshoot – which she loved!

“Facebook is very important forthose with CF, it’s where the CFcommunity is – as they cannotmeet together because of cross-contamination.”

Ms Enright added how CF Ire-land is currently fundraising forisolation units in all hospitals na-tionwide - which will reduce cross-contamination for CF patients.

Thanking CF Ireland for its sup-port over the years, Siobhan en-couraged members of thecommunity to think of the CF unitat Tallaght Hospital and CF Ire-land, which also provides educa-tion, support and advocacy, whenorganising charity events or takingon the mini-marathon.

For further information visitwww.cfireland.ie or call 1890 311211.

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Public Notice

Environmental Protection Agency Acts, 1992 to 2007.

Genetically Modified Organisms (Deliberate Release) Regulations, S. I. No. 500 of 2003

PROPOSED DELIBERATE RELEASE OF A GENETICALLY MODIFIED ORGANISM

The Center for Cellular and Molecular Therapeutics at The Children’s Hospital of Philadelphia, 5thFloor Colket Translational Research Building, 3501 Civic Center Boulevard, Philadelphia PA 19104-4319 USA, pursuant to the above legislation, has given notification to the Environmental ProtectionAgency (EPA) of a proposal to conduct a clinical trial in patients suffering from severe Haemophilia B(Factor IX deficiency), using a Genetically Modified Organism. If the proposal is approved by theEPA, the proposed clinical trial would also be governed by the Irish Medicines Board under theEuropean Communities (Clinical Trials on Medicinal Products for Human Use) Regulations, 2004, SI No 190 of 2004 and amendments.

1) Description of the Genetically Modified Organism proposed for use in the clinical trial

The genetically modified organism (GMO) (called AAV8-hFIX19) proposed to be released is arecombinant hybrid Adeno-associated Virus (AAV) which has been engineered to express humancoagulation factor IX (hFIX) for the treatment of patients with severe Haemophilia B. Patients will beinjected with the hFIX gene therapy treatment. AAV is frequently found in humans and can infectanimals, but it is not pathogenic, toxigenic, virulent, allergenic, or a carrier (vector) of a pathogen.AAV8-hFIX19 is not able to replicate in humans or colonise other organisms.

2) Proposed location of clinical trial

The release will take place at St. James’s Hospital, James’s Street, Dublin 8, during the course of aclinical trial in patients with severe Haemophilia B.

3) Purpose of clinical trial

The purpose of this clinical trial is to test whether a single administration of AAV8-hFIX19 is safe forpatients and to see if it can increase the amount of hFIX in the blood of patients with severeHaemophilia B.

4) Date of the proposed clinical trial

The notification is to cover the treatment of clinical trial patients at the named hospital location fromMay 2013 to September 2015. The investigators (doctors) at the clinical trial location will treatapproximately 4-8 patients during this time.

In accordance with article 16(1), representations in relation to the said notification may be made inwriting by any person or body to the Environmental Protection Agency, P.O. Box 3000, JohnstownCastle Estate, Co. Wexford not later than 28 days from the date of publication of this notice andsubject to payment of a fee of €10 as specified in article 48 of Statutory Instrument (SI) No. 500 of2003. Further information on the proposed deliberate release may be obtained from theEnvironmental Protection Agency.

Belgard schoolgirl selected to front new CF campaign

12 news The Echo, Thursday, February 21, 2013www.echo.ie

TALLAGHT Sports Complex will host a Fun Run inTymon Park this Saturday.

The run begins at 2pm in the complex car park andfollows a 5km route through the park.

All are welcome and registration costs €5. Funds arein aid of the Julie Wren Trust.

Tallaght Complexto host 5km fun run

Ph: 468 5350news@echo.ie

Contact our newsteam with your stories

COUNCILLORS at this week’s Rathfarnham AreaCommittee meeting called for the provision ofmicrochipped dog fouling bins to monitor their use,reports Anne Sharkey.

Fine Gael Councillor Anne-Marie Dermody said thatadditional bins with microchips could also help the TidyTowns effort within the county.

“Technology has led the way in relation to thiscouncil and the micro chipping of additional dog foulingbins could lend itself to the Tidy Towns effort within thecounty,” Cllr Dermody said.

“An awareness campaign is needed to educate peopleon the issue. I have received two dog licences in the lasttwo weeks without any information packs.”

A spokesperson for South Dublin County Councilagreed that a package on responsible dog ownershipshould be included with each dog licence permitted.

“More than 9,000 dog licences were issued by SouthDublin County Council last year. We plan to provideinformation on responsible dog ownership with eachlicence in future.”

A Green Dog Walking campaign is being launched inMarch to combat the problem of dog fouling in SouthCounty Dublin.

Microchip bins callto beat dog-foulingSaoirse wins heart

of Facebook group

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