We should have been having our Family Activity Day this Saturday but COVID-19 has stopped us in our tracks.
However, it has not stopped this group of fundraisers that are taking part in activities all over the world to raise funds for our CLAPAI.
Check out the link below or search Go Fund Me for Funbarr fundraiser. You will be amazed by how many people are involved.
You will probably be aware by now that, as a result of the COVID-19 situation, we have had to postpone all planned surgery and clinics until we are over the worst of the epidemic. At this stage, we don’t know how long that will be, but it will be much sooner if we all pull together and follow the HSE advice on hand washing, social distancing and reporting symptoms so that we can be tested and isolated early (https://www2.hse.ie/coronavirus/). Meanwhile, here is some information that you will hopefully find reassuring.
Delayed surgery
Fortunately, the risk of serious illness in children from COVID-19 is very low and much lower than in adults. However, that risk increases with anaesthesia and recovery from surgery so we have postponed all but really urgent surgery. Also, we need to keep as much of our resource as possible free to deal with a surge of COVID-19 cases.
We are confident that a delay of a few months in your child’s surgery is not going to affect the long term outcomes. When we schedule the surgery we leave plenty of leeway for all sorts of delays and when these happen we have plenty of time to catch up. We are keeping a careful and accurate record of all of the postponed surgery and as soon as things get back to normal we will prioritise the children who have been delayed and work hard to catch up as quickly as possible.
Delayed clinics
Laura and Claire (our cleft co-ordinators) are keeping account of all of the appointments for the postponed clinics. We will reschedule these when the worst of the crisis has passed and as soon as we get the go ahead. Because we have control over organising and scheduling appointments within the cleft team we can be pretty sure that no-one is going to get missed or forgotten about. Again, we will be back on track and working hard to catch up as soon as things settle down.
New referrals
During this time there will be babies born with clefts and expectant mothers who get an antenatal diagnosis that their baby has a cleft. We will be making individual arrangements to take care of those families.
We will put up a further message on the website as soon as we are in a position to start rescheduling clinics and surgery. You may also find it useful to access the Children’s Health Ireland website at https://www.chi.ie for general information updates.
Until then, if you have any pressing issues or concerns about your child, please feel free to contact Laura or Claire as usual.
Stay safe and well and follow the HSE guidelines.
The Cleft Lip & Palate Association of Ireland is delighted to announce this year we are returning to the wonderful Causey Farm. We have an action packed day planned, from the petting farm to bog jumping.
The Family day is for children and young adults who were born with cleft. It’s for parents, brothers, sisters, babies and grandparents too. Grown ups born with cleft might like to bring their own family to the event, it’s never too late to join in.
It is a time to enjoy activities together, to chat over tea & coffee, to enjoy the annual raffle and above all to meet other families.
Meet at 10:00am and finish around 4:00pm on Saturday June 15 2019 at Causey Farm, Girley, Fordstown, Co. Meath.
Email info@cleft.ie if you have any queries
We look forward to seeing you for another great family day.
For more information or to book click here:
https://www.eventbrite.com/e/cleft-lip-and-palate-association-family-day-2019-registration-61384017248?ref=enivte001&invite=MTY0NDA4NjgvZGFycmFuYnJlbm5hbkBnbWFpbC5jb20vMA%3D%3D%0A&utm_source=eb_email&utm_medium=email&utm_campaign=invitemodernv2&utm_term=eventpage Family Activity Day 2019 Booking Form V2.0
The Cleft Lip and Palate Association of Ireland is delighted to announce our 2019 Information Evening with themes of Speech & Hearing.
The topics titles are:
‘Let’s get Talking’ Early Intervention in Children with Cleft Palate: Roberta Fleming Speech & Language Therapist, Cleft Team, Temple Street Hospital.
Hearing and Cleft Palate: Jen Sim, Clinical Audiologist, Dublin Audiology, 12 Berkely Road, Dublin 7.
Speech at Home: An update on Parent Led Articulation Therapy.
Followed by
Tea & Coffee and Meeting
The Information Evening is an ideal time to meet other families affected by cleft. Come along and enjoy a cup of tea with all of us.
Where: Clayton Hotel Liffey Valley, Fonthill Road, Liffey Valley, D22 X4W6 Dublin 22
When: Wednesday, May 29, 2019 from 7:30 PM to 9:00 PM
For more information and to sign up:
https://www.eventbrite.com/e/cleft-lip-and-palate-association-information-evening-may-2019-registration-61605666206?ref=enivte001&invite=MTY0NjMwNDYvZGFycmFuYnJlbm5hbkBnbWFpbC5jb20vMA%3D%3D%0A&utm_source=eb_email&utm_medium=email&utm_campaign=invitemodernv2&utm_term=eventpage
Dublin Final Report on Parent Led Articulation Therapy 270718
Dr Triona Sweeney and Dr Debbie Sell recently published the Report on Parent Led Therapist Supervised Articulation Therapy (PLAT) for cleft palate speech disorder study (attached).
This two-centre study involving Trinity College Dublin (TCD) and Great Ormond Street Hospital NHS Foundation Trust (GOSH) was carried out between January 2016 and July 2017. The main purpose was to test if parent led intervention is comparable to traditional speech therapy intervention in children with cleft palate speech disorders.
The study was funded by the Cleft Lip and Palate Association of Ireland, the Temple Street Foundation (Ireland) and CLEFT-Bridging the Gap (UK).
It is with deep regret that we learned of the sudden passing of Anne McGillivary, Temple Street Cleft Coordinator. Anne has helped countless families over many years. Her cheer, her work ethic, her vision and compassion will be missed by all who worked with her and all who met her through cleft services.
Anne had a long association with CLAPAI and in recent years was a valuable and dedicated member of our committee. We are sure that Anne’s influence will extend for generations. CLAPAI extends its condolences to Anne’s family, friends and colleagues.
Anne, we will miss you dearly, RIP.
https://rip.ie/death-notice/anne-mcgillivary-firhouse-dublin/361776
The Cleft Lip & Palate Association of Ireland is delighted to announce this year’s trip to a new venue, Carlingford Lough Activity Centre, Co. Louth on Saturday, 16th June 2018.
We have an action packed day planned, full of activity on land and at sea for all age groups.
The Family day is for children and young adults who were born with cleft. It’s for parents, brothers, sisters, babies and grandparents too.
It is a time to enjoy activities together, to chat over tea & coffee, to enjoy the annual raffle and above all to meet other families.
Meet at 9:30am and finish around 4:30pm. You can book your place using the attached form or by clicking the link to Eventbrite:
Email info@cleft.ie if you have any queries.
We look forward to seeing you for another great family day!
Closing date for booking is Saturday 9th June 2018.
Kind regards
Georgina Wade (Chairperson)
On behalf of Committee
UPDATE- Due to the upcoming weather event in Dublin our information evening scheduled for 1 March has been postponed until 14 March 2018.
The Cleft Lip and Palate Association of Ireland (CLAPAI) is hosting an information evening for adults attending cleft services in St James’ Hospital on Thursday, 14 March 2018 at 19:30 in the Clayton Hotel near Liffey Valley Shopping Centre.
The focus for the evening will be on dental work and the experience of adults who have returned to the service or require the service.
Please RSVP on 0871319803 or info@cleft.ie.
Please note that admission is free and tea and coffee will be served.
The Cleft Lip and Palate Association of Ireland AGM & Information Evening 2017
Thursday 30th November at 8pm, (Doors open from 7.30pm) Clarion Hotel Dublin, near Liffey Valley.
The themes this year are surgery and braces and our speakers are as follows:
1. A Parent’s Guide to Cleft Surgery by Mr David Orr, Consultant Cleft Surgeon, Our Lady’s Hospital, Crumlin & St James’ Hospital.
2. My Experience With Braces by Molly Wade, Lead Singer with The Enzymes.
These will be followed by our AGM, Tea/Coffee & General Chat.
The information evening is an ideal time to meet with other parents, adults born with Cleft and medical professionals. Please come along and enjoy a cup of tea/coffee with us all.
To help us plan r.s.v.p. to info@cleft.ie. Admission is free.
Thank you
The Committee
CLAPAI is hosting an informal meeting on Tuesday 16th May in the Louis Fitzgerald Hotel, on the Naas Road. (Link attached. below).
The doors will be open at 7:30 with tea and coffee served. At 8pm we are glad to have parent and committee member Aine Doyle give us a session on ‘First Aid for Toddlers’, Aine is a qualified Emergency First Responder as well as a qualified life guard. Her many qualifications include CFR,CFRA,CFRI,OPF,PFA &EFR. Responding to emergencies is something we think every parent will want to know more about.
http://www.louisfitzgeraldhotel.com/location-and-directions.html
Our emergency response session will be followed by a Q&A discussion on common things that affect us as parents of child born with cleft. As a committee we can share our combined experiences but we also want to know where the pressure points are in the service currently.
If you can send any items of specific interest in advance please email info@cleft.ie.
There is no charge for the evening. All are welcome but please send us an email to help us with bookings.
Thanks
CLAPAI
