CEO's Annual Report 2023

A chara

2023 has been an amazing year of growth for FASD Ireland. In the early days of setting up FASD Ireland, I wondered if even having an organisation focussing on Foetal Alcohol Spectrum Disorder would amount to anything in Ireland, however today I am confident that there is such significant demand for our services, it truly fills the heart. 

During Q1, we were lucky enough to make contact with the Co-operative Careers team at University of Limerick, and a wonderful placement student Rob O’Connell joined our team. Rob was tasked with establishing the back office support framework for FASD Hub Ireland, and then when that was complete, took time to learn as much as he could about the condition. Like a sponge, Rob literally learned as much as he could, and worked tirelesly to understand what it is like to live in Ireland with FASD, as well as understand the challenges faced by parents or carers of a child with FASD.

FASD Hub Ireland was launched on time in March 2023, with well wishes from Minister for Disability Anne Rabbitte TD. Our first call, some 5 minutes after opening the telephone lines was from a GP asking how to go about getting a diagnosis for a patient. That has proven to be a very popular question to the Hub. During 2023 FASD Hub Ireland opened a second telephone line and launched FASD Hub Northern Ireland. Both helplines have been extremely busy, with over 800 telephone calls throughout the year. 

FASD Ireland was lucky enough to be invited by Social Entrepreneurs Ireland to take part in their Action Lab of 2023. This provided a bursary of €3,000 and additional seed funding of €5,000 to continue our work with FASD Hub Ireland. We were thrilled and used the money to keep Rob working on our Hub team in a part time capacity whilst continuing his degree at University of Limerick. We are extremely grateful to Action Lab 2023 sponsors The Tomar Trust, eBay Foundation and RBC Brewin Dolphin for their support. 

Rob and Maggie both attended Salford University’s FASD Conference in Manchester. This was a great opportunity for them to meet with highly respected names in the FASD sector, including our newly appointed expert medical advisor, Professor Raja Mukherjee, as well as Dr David Junior Gilbert, who is working on research around FASD in the Justice System. 

On September 9th, World FASD Awareness Day, again we were able to get some public buildings lit up red, notably all of Carlow Town’s Public Buildings, and in Northern Ireland, Fermanagh did the same. All of the team were wearing Red Shoes and we engaged with local and national press to highlight the day, and to raise awareness of the challenges that people living with FASD encounter in Ireland. 

During September, we attended the launch of Dr Katy Tobin’s research FASDcare at Trinity College Dublin. This was a collaboration with Alcohol Forum Ireland and Global Brain Health Institute. Ireland’s first ever piece of research that examined experiences and needs of family caregivers of people living with FASD in Ireland. The event was well supported, and it was good to see Thomas Pringle TD and Roísín Shortall TD in attendance and asking questions. 

In October, we learned that we had been successful in our bid for the HSE Lottery Fund and we were able to install a glass screen and door to our training room on our second floor. This has allowed us to generate additional income from the second floor and has also reduced our energy costs by partitioning off the space. We are grateful to the HSE MidWest for awarding this grant to us.

Maggie decided to leave us at the end of the year, and had offers to travel to Canada and around the globe in her role as an international spokesperson for FASD. We were sad to see Maggie leave, and have plans to remain in touch. We are hopeful when Maggie returns to Ireland that she will consider our invitation to join our Advisory Board as the voice of a person who lives with FASD in Ireland. 

Our work with the Hidden Disabilities Sunflower continues to keep us extremely busy, and we have increased the number of organisations that are members of the Sunflower to over 70. Some well known brands including Aer Lingus and Ireland West Airport have joined and many more in the pipeline. Income for FASD has increased and that allows us to continue funding FASD Hub Ireland when grant funding is perhaps a little thin on the ground! 

Our second annual accounts have been prepared and signed by the Directors. The accounts are available here, and anyone can view them either online or calling to our offices. Again, we have been able to keep our administrative costs low, and have used innovative funding streams to continue to provide our services to people who need them. 

We have had an absolutely amazing year, and I am thrilled that as we look towards 2024, we are on task and on schedule to deliver everything that we had planned back in 2021 when the organisation was founded. None of this is possible without the hard work and dedication that my team gives, and of course without the support of the wider public in helping us to raise awareness of Foetal Alcohol Spectrum Disorder. 

Is mise, le meas

Tristan Casson-Rennie

Chief Executive Officer

FASD Ireland CLG

1st February 2024