Dear Friends 

CLAPAI – Family Day 2022 – Castlecomer Discovery Park

We’re  going to Kilkenny for our  Family Activity Day, and we’d love to see you there. Join us for Cleft Lip and Palate Association Family Day 2022, June 18, 2022 at 9:30 AM. Activities for everyone from Elf Trails to Zip Lines, walks through the forest, and strolls by the lake. 

This is a chance for young people, grown ups and families affected by cleft to meet, chat & have some fun.  The event is subsidised by donations and fund raising.  

Register soon because so we can let Castlecomer Discovery Park know that you are coming – the link is above. 

We hope you’re able to join us!

We are inviting families affected by cleft to an informal discussion on creating a Photo Booklet for CLAPAI.  Discussions are at an early stage.  We have set up a Zoom forum with agenda as follows 

• Open 8:00
• Some thoughts from the Committee 8:05
• Open forum 8:20
• Next Steps 8:45
• Close 9:00

FAQs for the Meeting

How can I get the link to the event?

Book an Zoom ticket on Eventbrite. After you register you will receive an email confirmation that has the Zoom link. Click on the link to join the meeting. The meeting will open at 7:50 to allow people time to connect before hand.

https://www.eventbrite.com/e/clapai-discussion-on-developing-a-photo-booklet-registration-261374436977

How can I ask a question?

Questions can be sent in advance to info@cleft.ie or by raising a hand via Zoom.

How can I contact the organizer with any questions?

Text 087 131 9803 or 

Email info@cleft.ie 

Check www.cleft.ie for updates

Also check Cleft Lip & Palate Association of Ireland on Facebook

We have received an invite to join a family forum being hosted by Children’s Health Ireland. They are particularly interested in families who have been in a children’s hospital in the last three years. It would be good for families with cleft if some families could be involved. The link to register is attached.  If you can join let us know how you get on   http://childrenshealthireland.ie/chi-family-forum/.

Thursday 18th November 2021, 8pm

Guest Speaker Professor Gerry Kearns, consultant maxillofacial surgeon at St James’s Hospital.

The meeting will open at 7:50 to allow people to connect.

• Opening address & AGM 8:00

Guest Speaker Professor Kearns

• Alveolar Bone Grafting 8:15

• Orthgnatic (Jaw) Surgery 8:45

• Family Day & 40 Year Celebration News 9:15

• Meeting Close 9:30

Tea & Coffee (in your own home) & Chat & 40 years

Book your Zoom Ticket on Eventbrite

https://www.eventbrite.ie/e/clapai-information-evening-agm-thursday18th-nov-2021-registration-200489107317

29 September 2021 – 3 available time 9.00, 13.00 and 18.00

Speech at Home is the brainchild of Dr Triona McSweeney and Dr Debbie Sell. For the past number of years they have passionately followed their dream to make Speech Language Therapy more accessible to families affected by cleft. As co-funders of the early research, the Cleft Lip and Palate Association of Ireland are delighted to see Speech@Home reach this very important milestone.

The launch features a 30-minute free webinar which will be run at three different times during the day – 9am, 1pm and 6pm. Register at https://speechathome.eventbrite.ie

Speech@Home is an evidence-based online speech therapy resource for speech and language therapists and parents to support children with speech disorders related to cleft palate or other similar-sounding speech disorders. It has interactive Parent Training, a unique Therapy Programme Builder and many automated Resources.

There are 2 courses for parents: 

• A short 2 hour introductory course to SpeechatHome. This may be particularly appropriate if you have a young child or your child is on a waiting list for therapy. Or you are already having therapy and you want to know a little bit more about the process.
• An in depth training course for parents who want to take a more direct role in delivering therapy with their child under the supervision of a therapist, which may also be suitable for parents who are having difficulty accessing regular therapy.

This  30 minute launch webinar will show you a bit more about Speech@Home. You will also see an example of the Therapy programme that the therapist will give you and examples of the resources which you need to do the therapy activities.

Hear directly from a speech and language therapist, a teaching assistant and a parent who will tell you about their experience in using Speech@Home

To find out more about Speech at Home for parents click https://speechathome.org/for-parents/

We would welcome a good show of strength for the remarkable work undertaken by Dr Sweeney & Dr Sell. To book your place on the course click on the Eventbrite https://speechathome.eventbrite.ie

Cleft Lip and Palate Association of Ireland, Celebrating 40 Years, 2021

We’re hosting a new event, and we’d love to see you there. Join us for Informal Zoom Evening for Parents (Limited), May 27, 2021 at 20:00.

Register soon because space is limited.

We hope you’re able to join us!

Open with introductions at 8pm, technology skills allowing we will use Zoom Break Out rooms to split into areas of special interest

• Social Transitions
• Surgeries
• Speech
• Dental

A member of the committee will stay with each group. After some chat we will gather again to share our thoughts.

No organised tea & coffee to finish I am afraid but you can definitely have your own cuppa in hand as we bring the session to a close at 9pm

Eventbrite Link 

https://www.eventbrite.ie/e/informal-zoom-evening-for-parents-limited-registration-156326995251

To mark Cleft Awareness posts we have had some really really lovely pictures posted on our public Facebook page – Cleft Lip & Palate Association of Ireland.  Congratulations to all our famillies we are on this journey. We really have some of the cutest babies you ever did see! 

The Cleft Lip and Palate Association of Ireland is delighted to invite you to our Spring 2021 Information Evening via Zoom.  Mr David Orr and Dr Catherine de Blacam, plastic surgeons with CHI Crumlin & St James’s Hospitals, will present …

Nothing about us without us; Patient-reported outcomes and research at the Dublin Cleft Centre.

David will discuss the outcome measures that have traditionally been recorded in cleft surgery and why the team are now trying to emphasise patient reported outcomes.

Catherine will explain specific patient reported outcome measures used in clinc. Catherine will also introduce two research projects that the team would like to involve patients/parents with .

The meeting will open at 7:45 to allow people to connect at leisure. Meeting starts 8pm.

• Introductions & Update from CLAPAI 8:00
• Presentation Mr Orr 8:10
• Presentation Dr de Blacam 8:30
• Questions & Feedback 8:50

Meeting End 9:00

Please send any questions you have in advance to info@cleft.ie

Please click here to register on Eventbrite

FAQs

How can I get the link to the event?

After you register you will receive an email confirmation that has the Zoom link. Click on the link to join the meeting. The meeting will open at 7:45 to allow people time to connect and chat before hand.

How much does the event cost ?

This is a free event, as always donations greatly appreciated through www.cleft.ie

How can I contact the organizer with any questions?

Text 087 131 9803 or 

Email info@cleft.ie 

Check www.cleft.ie for updates

Also check Cleft Lip & Palate Association of Ireland on Facebook 

The update for Lockdown 3 is that Primary surgeries – Lip & Palate – are going ahead as they did for previous lockdowns. Bonegraphs had almost caught up from the previous lockdowns. They are on hold but will be scheduled asap after the current lockdown. Adult surgeries are on hold. Face to face clinics are also on hold but a plan is being worked on to ‘catch up’ as soon as possible after lockdown. Cleft staff are still working and are still contactable. Please make contact with them if you have any worries or concerns, From experience we know how much emotional energy goes into appointments and moreso surgeries. The team are working hard to keep us and themselves safe so that we can all of us hit the ground running when we get the okay.

Bottles & Teats have arrived.  The first batches are packed and ready to send to maternity hospitals.  You can see we are using An Post’s distinctive delivery boxes so that the bottles will be easily identifiable plus the boxes are a good size to store on a busy ward. 

At 9:52 on Christmas Eve we still do not have clarity on BREXIT plus COVID has meant no deliveries from UK anyway.  If it were not for the generousity of families fundraising for CLAPAI, it would not have been possible for us to secure the bottles.  A heartfelt thanks to you.  Thank you also to the Transition Year Students of Loreto Abbey Dalkey who did a massive job assembling the bottles and then packing bottles & teats into bags.  258 starter packs created out of 500+ bottles & 1,000+ teats.  Go raibh mile maith agaibh. 

Keep watching this site for updated bottle arrangements. Hospitals should email info@cleft.ie for delivery information.