Williams Syndrome

Empathy, Inclusion & Empowerment: A Conversation on Williams Syndrome with Dearbhail Mullan

“They can do anything anyone else can do — it might just take them a little bit longer.” In this insightful episode of Disability Matters, hosts John Comiskey and Patrick O’Donnell welcome Dearbhail Mullan, Treasurer of Williams Syndrome Ireland, to discuss the realities, resilience, and joys of living with Williams Syndrome — a rare neurodevelopmental […]

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Barbara Brennan - Programme Coordinator for See Change, the National Stigma Reduction Partnership, where she has been promoting mental health awareness and stigma reduction for a decade. 28.06.23.-1
Stephen Hodnett - Occupational Therapist with the organisation and developing telehealth services for DCD with the University of Limerick. Dyspraxia Ireland. 28.06.23.-2
Roseanne Joyce - has been doing some work experience with the Home Help section of BCIL. 22.06.2023.-1
Karen Smith of BCIL - discussing the ongoing issue of Changing Places. 22.06.2023.-2
Michael White - discussing his late wife Kay O’Shea who was a longstanding Disability Rights activist and the issue of access at Spike Island in Cork. 22.06.2023.-3
Shelly Gaynor - Peer Mentor of ILMI. Shelly directs a Personal Assistants Service through her own company shellyonwheels. Giving disabled people complete control over their own lives. 04.07.2023.-1
Wunmi Excel Ategie- social care practitioner and a humanitarian actor. She has over 20 years experience of working with the deprived and under-represented groups. 04.07.2023.-2
Laura - OPhilbin- Interim Research & Policy Manager at The Alzheimer Society of Ireland. Management and activities of the Research & Policy Team.Laura holds a PhD from the Dementia Services Development Centre at Bangor University in Wales in addition to a BA in Psychology from University College Dublin. 28. 07. 2023. https://www.carealliance.ie info@carealliance.ie Ph. 01 874 7776
Helen Baxter - Play volunteer in Children In Hospital Ireland At the heart of Children in Hospital Ireland’s work is its play service which is now available to children in hospitals throughout Ireland. Charity managing a voluntary service in Irish hospitals. By providing engaging and supportive play in wards, playrooms, emergency departments and outpatient departments, Children in Hospital Ireland play volunteers nurture curiosity and creativity and provide distraction from the stress of being in hospital. Sandyford, Dublin 18. 28. 07. 23. Ph: 01 290 3510 https://childreninhospital.ie info@childreninhospital.ie
Amy Kelly - Head of Communications and Fundraising at Crohn's & Colitis Ireland CCI Director, who lives with Crohn’s disease. Crohn's and Colitis Ireland is a support organisation in Ireland for people who are living with, or impacted by, Crohn's disease or ulcerative colitis (collectively known as Inflammatory Bowel Disease or IBD). Some of the negative impacts of living with IBD may include social exclusion, unemployment/under-employment,etc. 28. 07. 23. Ph.: +353 1 531 2983 https://crohnscolitis.ie info@crohnscolitis.ie
Clodagh- Hogan-The Jack and Jill Children’s Foundation was set up in 1997 by Jonathan Irwin and his wife Mary Ann O’Brien (founder Lily O’Brien’s chocolates), in memory of their son Jack who suffered a brain trauma shortly after birth that left him developmentally delayed and shattered the dreams and hopes of his parents. 04. 08. 2023.
Fleachta Phelan - DFI organisation working with people with disabilities to implement the UN CRPD and ensure their equal participation in society. 10. 08. 2023.
Joyce Ogunyemi is an International Development and Education expert and a British qualified teacher (PGCE Maths Specialist). Before her teaching career, Joyce devoted over 20 years in the international development sector to environmental conservation and sustainable development causes, justice sector reform and policy development, human rights advocacy, fundraising/donor relation and implementation of intervention programmes. As an education consultant, Joyce worked in Rwanda where she assessed the quality of an educational programme and delivery method to ensure the quality of provision. She was also a researcher with the National Universities Commission Abuja where she assessed the quality of tools used in the accreditation of programmes in Nigerian universities. 06.09.2023
Make Way Day 2023 - Interview with Geraldine Rooney and Karen Smith. Seeks to bring the disabled and the wider community together to consider how people with disabilities use the various public spaces we share. It is a chance for the disabled community to come together and find solutions to improve the lives of those with different abilities. The campaign is led by the Disability Federation of Ireland (DFI), and it is a collaboration between the different government and voluntary sectors. #MakeWayDay23 on Friday 22nd September, will help bring about this change, by creating awareness of the access issues faced by the people, as they go about their daily business.
Paula Harris - Crosscare services Manager, Community Food Services I have worked in three different Crosscare services – Portland Row, Holles Row and Dun Laoghaire since 1992. I have seen all sides of poverty in my time with Crosscare. The one thing that doesn’t change is how we treat people – with love, respect and dignity. That is what has kept me with Crosscare – how we treat the clients – how we treat each other. Tel: 01 836 0011 Email: info@crosscare.ie https://crosscare.ie/
Emilie Conway - jazz singer, composer and lyricist. DADA: Disabled Artists & Disabled Academics Campaign for Human & Cultural Rights Emilie is a founding artist of a new movement, the DADA Campaign for Human and Cultural Rights. Emilie was prompted to become more vocal on the rights of people with disabilities from her own experiences, heightened by the relative absence of disabled peoples’ voice throughout the pandemic, compounded yet again, as the society opens up. DADA stands for Disabled Artists & Disabled Academics attesting to the coterie Emilie’s “speaking up” attracted to her over the past year. DADA’s mission is to achieve greater equity for disabled people by pointing out and challenging barriers to full participate and contribution to the arts, culture, economy and whole of society. DADA aims to achieve this through creation of art that builds public awareness, engaging with media, and building transformative relationships with Arts and Cultural Institutions and Government, see media, for more equitable policy and practice in line with UNCRPD. If you would like to get involved please email dadacampaign@gmail.com and follow us on Twitter: @DADACampaign https://www.emilieconway.ie
Peter Kearns Cross Border Social Inclusion Project Manager and Co-ordinator for Independent Living Movement Ireland. (ILMI)
Sarah Keogh - Coeliac Disease, Gluten intolerance Sarah Keogh, a dietician who works actively with The Coealic Society of Ireland, explained that the disease remains undetected amongst thousands of Irish people Coeliac Disease (pronounced see-lee-yak) is an autoimmune disease which causes some adults and children to react adversely to gluten in food. Gluten is the protein in wheat, barley and rye. These grains are common ingredients in foods such as bread, cakes, pasta, beer, pizza and other manufactured foods.
Acquired Brain Injury Ireland - Brain Injury Support & ServicesOur expert teams support individuals and families recovering from the impacts of brain injury by offering services and tools that help them live their fullest lives with confidence. 25.09.2024
Alannah Brady - BCIL employee Crohn's & Colitis 18.10.2024
Bathroom Adaptions Bathroom Adaptations is one of Irelands leading providers of high quality domestic and commercial bathroom conversions. Our staff have over 20 years experience in the area of products and services for the eldery and the disabled so an expert, professional service is guaranteed to all clients.18.10.2024
Carmel Doyle RNID, RCN, RNT, BSc, PgDip CHSE, MSc Nursing is an Assistant Professor and Head of Intellectual Disability Nursing at the School of Nursing and Midwifery, Trinity College, Dublin. 18.10.2024
Christina Donnelly, National Co Ordinator, Chronic Pain Ireland Chronic pain is a complex, multi-faceted disease that prevents people from enjoying a full life A lack of understanding within the healthcare system and society only compounds the physical and emotional distress caused by persistent pain. Many people live with pain for years before they get a proper diagnosis. 25.09.2024
Eilish Burke - Ageing and Intellectual Disability Dr. Eilish Burke RGN RNID BNS MSc PhD is the Ussher Assistant Professor in Ageing and Intellectual Disability and the Associate Director of the Centre for Excellence in Ageing and Intellectual Disability. 18.09.2024
Fiona Armitage, a person with Chronic Pain. 03.10.2024
Ciaran Garrett of Hail Housing, Ireland’s specialist mental health housing association - HAIL Providing the key to independent living since 1985 through high quality social housing and mental health tenancy sustainment services. Our housing management team ensures that the highest standards of accommodation are maintained and that our tenants are provided with secure tenancies in communities in where they want to live. 11.09.2024
Karen Charnley, As Chief Executive Officer, Karen provides strategic leadership for the All Ireland Institute of Hospice and Palliative Care (AIIHPC) including brokering relationships between the Institute’s 28 members (universities, hospices, health and social care organisations and charities), funders and key stakeholders. Karen leads the Institute Team and oversees the delivery of the Institute’s Business Plan across education, research, policy and practice, service user and career engagement and raising awareness. Karen also represents the Institute on key regional and national fora and contributes to palliative care policy and strategic discussions. 12.09.2024
Kathy Forde of Tick Talk Ireland, Tick Talk Ireland is composed of a small group of passionate volunteers wanting to provide accurate information about the prevention, diagnosis and treatment of Lyme Disease. 17.10.2024
Kate and Mary of Move For Parkinsons, Move4Parkinson’s was established in November 2011 by Margaret Mullarney who was diagnosed with Parkinson’s in 2004. Since her diagnosis, Margaret has discovered that there is a huge range of activities that People with Parkinson’s (PWP’s) can undertake to improve their quality of life. 05.09.2024
Rachel and Orla of Narcolepsy Ireland, Narcolepsy Ireland is a voluntary organisation, which was set up to help and support people in Ireland with narcolepsy (and Irish People with narcolepsy all over the world). It provides a source of information and support to their loved ones, carers, employers and friends. 19.09.2024
Owen McGirr - Switchify app Hi, I’m Owen McGirr, and I developed Switchify, an open-source Android app designed to make smartphones and tablets more accessible for individuals with physical disabilities. As someone who has personally experienced the challenges of navigating technology with limited mobility, I created Switchify to address a need I knew was urgent: providing people with a simple, effective way to control their devices using adaptive switches 15.10.2024
Pascal Derrien - Migraine Association of Ireland Pascal is currently the CEO of Migraine Ireland and he is also a Board Member for IPPOSI and the Chairman of the Practitioner Council at SERI (Social Enterprise Republic Ireland 22.09.2024
Orla Veale, CEO Irish Thoracic Society The Irish Thoracic Society is the national organisation representing respiratory healthcare professionals throughout Ireland. The society is dedicated to championing excellence in the prevention, diagnosis, and clinical care of respiratory disease through its work in advocacy, education and research. 12.09.2024
Pioneering women The Voices of Fingal Women Pioneers program aims to establish a supportive platform for women, empowering them to articulate their leadership, deepen community connections, and impact local elections. 07.09.2024
Aiden Long - Communications & Strategic Engagement Manager (Asthma Society of Ireland) Asthma is a chronic disease but it can be controlled. Tragically, one person each weeks dies from asthma and 90% of these deaths are preventable. Through the delivery of health information, skills and support, we believe our programmes can raise awareness of asthma and improve people’s ability to control their symptoms and therefore reduce the likelihood of asthma attack. Our programmes are offered in a wide range of settings across all of Ireland. 18.10.2024
Lynn Boylan - European Parliament - GUE/NGL, Lynn Boylan is an Irish Sinn Féin politician who has been a Member of the European Parliament from Ireland for the Dublin constituency since July 2024. She was previously an MEP for Dublin from 2014 to 2019. From 2020 to 2024, she served as a Senator for the Agricultural Panel. Her priorities are: Fighting for Climate Justice and making sure this government doesn’t leave anyone behind in the transition away from fossil fuels. Campaigning for justice for the 48 victims who lost their lives in the Stardust Tragedy and their families. Fair tax reform to help hard pressed working families while generating sufficient revenue to invest in jobs, health, education, childcare and community services. 30.10.2024
John Mc Carry, Blue Stack Fondation - The Bluestack Foundation was established to provide direct supports to people themselves and direct supports to their families and carers. We raise most of our funds through the local community and a range of fundraising activities. We are heavily reliant on the generous donations of the local community and indeed the public who kindly take it upon themselves to fundraise on our behalf. 30.10.2024
Sarah Keogh - Coeliac Society of Ireland, We are a national organisation representing all coeliacs and gluten intolerant people in Ireland. We are also a European organisation which, as part of the Association of European Coeliac Societies, works towards European-wide legislation and research. We are everywhere!
Emma Clarke Conway & Eddie, Polio Survivors Ireland. We are the only organisation in Ireland providing practical support (and a listening ear) to people who had polio as babies or young children. Approximately 5,000 polio survivors in Ireland live with Post Polio Syndrome or Late Effects of Polio and have increasing needs as they age. With over 1,000 members, Polio Survivors Ireland works to ensure that survivors get proper support, services and information necessary to maintain their independence and dignity. (14.11.2024)
Reinhard Schäler, CEO and Founder - An Saol. Life and Living with a severe Acquired Brain Injury (sABI) To survive a severe Acquired Brain Injury is one of the most hard-hitting, life-changing events for the survivor, their families, and their friends. What makes it worse is that in Ireland families are left with no hope, basically having to fend for themselves. Shockingly, it is still accepted practice that survivors are sent to nursing homes – after a short assessment period in either an acute hospital or the country’s only National Rehabilitation Hospital (NRH) – to be ‘medicated, managed, and maintained’ for the rest of their lives. (21.11.2024)
Lynn Buckle, Award-winning Irish🦻Author (Chime - national charity, Deaf and Hard of Hearing people). Chime is Ireland’s national charity for Deaf and Hard of Hearing people. Through advice, services and our community we support those who are Deaf or Hard of Hearing, while also championing for equal rights and advocating for full inclusion in every part of society. (27/11/2024)
Shane & Karen - Taxi Transport Issues. Irish Wheelchair Association reacts to Transport issues across the capital.
Catrina Scullion - Classical singer (Soprano), Musician. Catrina is a highly accomplished and sought after Soprano soloist with an extensive and versatile performance background.
Amy Kelly, Head of Communications and Fundraising at Crohn's & Colitis Ireland, who lives with Crohn’s disease. Crohn's and Colitis Ireland is a support organization in Ireland for people who are living with, or impacted by, Crohn's disease or ulcerative colitis (collectively known as Inflammatory Bowel Disease or IBD). (09.12.2024)
Sean Brennan, is the founder of the charity Bikers Ride Out For Prems. The story of Bikers Ride Out For Prems started with a solo event by Sean Brennan called “Rev Up For Prems”, where he rode round Ireland visiting Neonatal Units and receiving sponsorship and accommodation from the very kind hearted people in Ireland. (16.12.2024)
Emma Wallace and Louise Patterson - Cystic Fibrosis Ireland - Cystic fibrosis is a multi-organ disease that primarily affects the lungs and digestive system.
James Casey - Christian Blind Mission (CBM) Ireland - CBM Ireland is a Christian international development organisation , committed to improving the quality of life of persons with disabilities in the poorest countries of the world. Our vision is of an inclusive world where all people with disabilities enjoy their human rights and achieve their full potential 13.02.25
Amy Lavelle - Project Manager (Re-emerge project) - Care Alliance Ireland (CAI) We work with organisations to provide better information and supports to Family Carers. We provide them with opportunities to collaborate on initiatives including National Carers Week, a multi-agency and multi-disciplinary Family Carer Research Group, and joint policy submissions 11.02.25
Clann Mór - Intellectual disabilities - Clann Mór endeavours to empower the people who avail of our service by supporting the principal of person centeredness. This allows each person to exercise choice in decision making and to have greater control over their own lives, in accordance with their ability. Clann Mór’s objective is to enable people with intellectual disabilities to live meaningful lives of their choosing in their local communities, and to deliver this objective in consultation with them, their families and the local community working with all the stakeholders. 07.02.25
BEAM Srevices - Supporting Adults with Additional Needs - We have been providing training and services to adults with special needs since 2000. BEAM stands for ‘Barrow Valley Enterprises for Adult Members with Special Needs’ and is an integral part of the Bagenalstown and South Carlow area. We are generously fostered and supported by the community in which we operate, and in return, we make a significant contribution in a host of fun and practical ways. 14.02.05
Pearse Corcoran - Heart Children Ireland (HCI) - Heart Children is the national organisation providing support to people born with Congenital Heart Disease (CHD) and their families. We work to help people with CHD of all ages to stay well, live confidently and enjoy life to its fullest. 12.02.25
Virge Connery - Clinical Director/ CEO - Chartered Behavioural Psychologist (PSI) -Virge is the founder of Behaviour Detectives and a frontline behaviour support services provider for individuals with Autism and challenging behaviours. She has been practising in the area of behaviours of concern and Positive Behaviour Supports over 10 years. Virge gradually moved to self-employment and has operated as a Behaviour Consultant with the HSE Disability Services since 2013. 04.02.25
Deirdre Lennon, Fundraising & Corporate Affairs Manager at Cheshire Ireland - At Cheshire Ireland we provide a vast range of services to people with both physical, sensory and neurological conditions, who often have very complex and high support needs. 21/03/2025
Ken Kilbride, ADHD Ireland - We are national level non-profit organisation dedicated to providing up-to-date information, resources and community building opportunities to individuals with ADHD, as well as parents of children with ADHD and the professionals who serve the ADHD community. 21/03/2025
Fiona Challoner Malone, Corporate Partnerships and Major Donor Manager - Down Syndrome Centre - Ireland’s only charity dedicated to clinical, educational and wellbeing services for children with Down syndrome from birth to 18 - and their families! 13/03/2025
Róisín Lonergan, The Creative Director (Five Lamps Arts Festival) - In 2007, while a teacher at Marino College of Further Education, Róisín approached Dublin City Council’s Arts Officers about the need for an arts festival in the Five Lamps area. The reaction was positive and Róisín was told that the Council would support it if she would initiate it. That she did and the festival is currently in its 9th year. 10/03/2025
IPPOSI - Laura Margia - “We are the collective voice of patients, science and industry in Ireland” 06/03/2025
Tara Regan, Communications and Advocacy Manager at Arthritis Ireland. Arthritis Ireland is the national patient organisation and health research charity representing one million people living with the condition in Ireland. (28.03.2025)
Vicky McGrath, CEO Rare Diseases Ireland. Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland. (31.03.2025)
Kim Tully, CEO Engaging Dementia. Engaging Dementia is a registered charity that provides training and resources for those who care for people with dementia in residential care, day centres, hospitals or the family home. Our training services are primarily for the staff of nursing homes, day centres and hospitals. Our resources are suitable for both formal and informal carers. We are involved in a range of community-based initiatives focused on supporting communication and engagement for people with dementia. (01.04.2025)
Joe Condon, Early Onset Parkinson's Disease. Early Onset Parkinson’s Disease (EOPD.ie) is a completely voluntary registered not for profit, providing peer Parkinson’s support all over Ireland. We are a small but committed team with big plans for the future of the organisation. (09.04.2025)
Gerry Murray, BCIL's Volunteer - Mental Health Café - Blanchardstown, Dublin. (10.04.2025)
Antoinette Tierney, Manager at Blanchardstown Centre for Independent Living (BCIL) (12.04.2025)
Aisling Shanley, Fundraising and Communications Manager at Childvision. Located in Drumcondra, Dublin, ChildVision is Ireland’s only dedicated centre for children with sight loss , some of whom also have profound sensory impairments and additional disabilities. We are a national resource for families and professionals needing expert help in the area of visual impairment or visual impairment and/or additional disabilities. We also offer a satellite service from our centre in Cork. (15.04.2025)
Carol Brill, Founder & Chair at Usher Syndrome Ireland. Usher syndrome (USH) is a rare genetic condition that primarily affects hearing and vision. Its main symptoms include sensorineural hearing loss and retinitis pigmentosa (RP), a progressive eye disease that causes gradual vision loss, leading to night blindness and tunnel vision. Some individuals with Usher syndrome may also experience balance difficulties due to vestibular issues. It is the leading genetic cause of combined hearing and vision loss, also known as dual-sensory loss or deaf, blindness, affecting an estimated 400,000 people worldwide. In Ireland, it is believed that between 260 and 350 people are living with this condition. (01.05.2025)
Geraldine Rooney, Freda Brady, Claire Power - BCIL services. “Independent Living is about having the freedom to have the same choices that everyone else has in housing, transportation, education and employment. Independent living is about choosing what aspects of social, economic and political life people want to participate in Independent living is about having control over your life, to have a family, to get a job, to participate socially and to realise your goals and dreams.“ For many disabled people, Independent Living can best be achieved by the employment of Personal Assistants. Independent Living is not just about daily living. It is about self-determination, control, choice and the real freedom to make decisions Independent. Blanchardstown CIL is part of a nationwide group of disability organisations of Ireland. (07.05.2025)
Amy Kelly, Inflammatory Bowel Disease (IBD), World IBD Day. World IBD Day World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn's disease and ulcerative colitis, known as inflammatory bowel diseases. (12.05.2025)
Claire Power, in charge of the reception desk at BCIL & Frida who is the Home Support Coordinator at BCIL, speaking about a friendly team that helps Disabled Persons make their lives easier every day. 07.05.2025
Sharon Lane from Dyspraxia DCD Ireland to talk about what dyspraxia (also known as Developmental Coordination Disorder or DCD) really is, how it affects both children and adults, and what services are available for those living with the condition. 14.05.2025
Ken Rogan, Head of Communications, Cancer Trials Ireland. 15.05.2025
Stephen Murray, Engagement Officer and Mentor at Aspire Ireland provided invaluable insight into autism, neurodiversity, and the work Aspire Ireland does to support autistic individuals in Ireland. 21.05.2025
Dearbhail Mullan, Treasurer at Williams Syndrome. From early diagnosis to education, inclusion, and the joy of peer connection, this conversation highlights the unique strengths and challenges of those with this rare neurodevelopmental condition. 19.05.2025
Patrick McGeoghegan, Advocacy and Communications Manager at Epilepsy Ireland. 22.05.2025
Eamon McPartlin, Functional Neurological Disorder (FND) Ireland. 27.05.2025
Vanessa Martin (HRPPD), Brendan Heade (Actor) - Walk Ireland - is an inclusive society where communities value and treat all people as equal citizens. 27.05.2025
John Michael, Irish Guide Dogs. Our dogs enable people who are vision impaired achieve greater independence and mobility Guide Dogs act not only as a mobility aid but also as a constant support providing both safety and social benefits. (27.05.2025)
Mary Tynan, Before the Covid pandemic, between 10,000 and 20,000 people in Ireland were believed to suffer from Myalgic Encephalomyelitis (ME), now sometimes diagnosed under the name Chronic Fatigue Syndrome (CFS). It is thought that the figures have now grown dramatically. Many unfortunately have not been diagnosed. (29.05.2025)