Board of Directors

As a patient-led organisation, our Board of Directors must consist of a majority of patients or patient representatives. Each director works in a voluntary capacity, donating their time to the organisation.

Board of Directors:

Dairine Dempsey, Chairperson

Breandan Ward, Company Secretary

Adrian Grenham, Treasurer

Ronan Holahan, Director

Brendan Buckley, Director

David Keegan, Director

John Acton, Director

Elaine Howley, Director

Suzanne Duggan, Director

James Kennedy, Director

Dee Hopkins, Director

The operations of the Board of Directors are supported by a subcommittee structure which deals effectively with specific aspects of the business of the company.

The active subcommittees are as follows:

  • Audit Subcommittee
  • Research Subcommittee
  • Counselling and Support Service Subcommittee
  • Advocacy Subcommittee
  • Fundraising Subcommittee
  • HR Subcommittee
  • Nominations Subcommittee

Dairine Dempsey, Chairperson

Dairine Dempsey is a pharmaceutical executive with 20 years’ experience in the pharmaceutical, biologic and device industries, including 9 years in the Irish Health Products Regulatory Authority (HPRA) working with both the European Medicines Agency (EMA) and the European Commission on technical issues and policy development.

She led the establishment of the National Health Regulatory Agency for Pharmaceutical Products in Bahrain and was involved in the successful global clinical development and post-marketing management of over 10 pharmaceutical products across multiple therapeutic areas, many for rare diseases.

As global Vice President, Strategic Regulatory Affairs at ICON, she has managed and resolved significant regulatory challenges arising in clinical development programs on behalf of clients. In the last number of years, Dairine founded and led the start-up phase of Open Orphan, a pharma company specialising in rare disease/orphan drugs. She is a NED for Soleno Therapuetics Europe Ltd. and OmniSpirant Ltd. and offers strategic consultancy in orphan drug development.

Breandan Ward, Company Secretary

Breandan Ward is a partially blind lecturer, leadership coach, consultant and advocate working with institutions and organizations on disability inclusion and leadership development.

Born in County Monaghan, Breandan graduated from University College Dublin in 1999 with a degree in Commerce and French. He started his career at Goldman Sachs and subsequently joined Morgan Stanley, where he held various leadership roles in their London and New York offices, including leading as Executive Director a global department which provided analysis and reporting to the risk management, operations, and compliance functions. Moving from the private sector in 2016, Breandan graduated from New York University’s Wagner Graduate School of Public Service with an Executive Masters in Public Administration.

Breandan now develops and teaches curriculum on disability, accessibility, and inclusion, with the goal of bringing these topics into the ‘mainstream’ curriculum in higher education. He teaches a course at NYU each Spring and has delivered related workshops at RCSI and Imperial College London. Breandan also works as a leadership coach, consultant, and advisor to a range of NGO, non-profit and for-profit organisations. He is Board Vice President at Xavier Society for the Blind, supports a number of sight loss charities through pro bono and voluntary work, and established the Working Age Forum which offers peer support to blind and partially sighted people in Ireland on the topic of employment.

An avid runner, Breandan also enjoys foreign languages and travel. He was diagnosed in 2003 with a retinal dystrophy causing progressive sight loss. Breandan’s family has a long relationship with Fighting Blindness through membership and fundraising and he is keen to contribute his skills and experience across different sectors to support and advance the charity’s mission.

 

Adrian Grenham, Treasurer

Adrian Grenham trained as a chartered accountant with KPMG and has worked for over 30 years as a financial services consultant, recently with Bank of Ireland. He has extensive experience in financial and risk management and compliance and has been treasurer on the boards and executive committees of several not-for-profit organisations.

Adrian is especially committed to ensuring that Fighting Blindness continues to adopt and comply with strong financial governance and risk management policies and procedures.

Ronan Holahan, Director

Ronan trained as a Chartered Accountant and has spent most of his career in consumer financial services in a variety of commercial and risk management roles.

Members of Ronan’s extended family were first diagnosed with retinitis pigmentosa (RP) around 40 years ago. More recently, Ronan’s young daughter was diagnosed with RP.

In early 2011, there was a significant breakthrough in identifying the carrier gene that causes RP in the Griffith family (the RPE65 gene). Ronan and his family members are raising funds to continue research into the family condition in the hope that a therapy can be developed.

Ronan’s family condition undoubtedly motivated him to become involved with Fighting Blindness, and he joined the Board of Fighting Blindness in August 2011.

Brendan Buckley, Director

A consultant endocrinologist with over 30 years medical experience, Prof Buckley also has extensive experience in clinical trials and has chaired several independent Data and Safety Monitoring Boards for medium to large cardio-metabolic and rare disease clinical studies.

Brendan recently retired from being Chief Medical Officer of ICON plc, an Irish clinical research organisation which is one of the largest in the world. He is Honorary Clinical Professor at UCC and Adjunct Professor at UCD. He was director of UCC’s European Centre for Clinical Trials in Rare Diseases. He was a board member of the Irish Medicines Board (now HPRA) and a member of European Medical Agency (EMA)’s Scientific Advisory Group for Diabetes and Endocrinology. He was also a member of the EMA Committee for Orphan Medicinal Products from 2000-2003 and a member of the EMA’s panel of experts. Professor Buckley also served as chairman of the Anti-Doping Committee of the Irish Sports Council.

Prof Buckley has had a long relationship with Fighting Blindness and has served on our Medical and Scientific Advisory Board since 2011. He has been a trusted advisor and mentor to members of our board and senior executive for many years and has been a champion of our mission and our goals.

Prof Buckley’s vast experience in clinical trials and all aspects of the regulatory process will ensure that Fighting Blindness remains in the strongest of positions to be able to advance our goals to develop treatments and cures for conditions that cause sight loss, to support people who are affected by those conditions, and to advocate with and for them to ensure that we are doing all we can to anticipate the challenges that will arise as the science translates from laboratories to clinics.

David Keegan, Director

David Keegan is a Consultant Vitreo-retinal Surgeon at the Mater Misericordiae University Hospital, Dublin since October 2006.

A graduate of the Royal College of Surgeons in 1994, he attained a Masters in Anatomy from UCD in 1996. He trained at Moorfield’s Eye Hospital London (1997 – 2005) and completed his PhD in retinal transplantation from University College London (1999 – 2002). He completed his vitreo-retinal training with Prof Stanley Chang at Columbia Presbyterian Hospital, New York (2005 – 2006).

He is a member of the Irish College of Ophthalmologists Council and Chaired the Manpower Training and Education Committee. He currently sits on the board of the National Council for the Blind. His clinical interests include management of surgical retinal disease and patients with age related macular degeneration and inherited retinal disease, including use of the Intra-ocular Magnifying Telescope.

His research interests are in the early immunological response to sub-retinal transplants. His clinical research interests are in the discovery of Biomarkers in age-related macular degeneration, clinical trials in anti-vascular endothelial growth factor (VEGF) therapies along with the development of the National Inherited Retinal Disease Register as Chair of the Ophthalmology Division, Dublin Centre for Clinical Research, Molecular Medicine Ireland, Dublin. He is on the organising committee of the Fighting Blindness Retina Conference.

John Acton, Director

John Acton has a PhD in Organic Chemistry and many years of experience in developing and implementing analytical methods in government laboratories. He participated in several EU led projects to develop standard operating procedures and reference materials.

He was manager of the Pesticide Laboratory responsible for the monitoring of pesticide residues in food using state of the art analytical techniques. John was national delegate at the EU standing committees and joint World Health Organisation/Food Agriculture Organisation working parties from 2001 – 2015 responsible for setting policies and regulations for maximum residue levels in food. He was also a member of the European Food Safety Authority networking group, which reported the monitoring results and assessed the potential risks to consumers in the EU.

Now retired, John welcomes the opportunity to bring his experience of the scientific and regulatory fields to the Board of Fighting Blindness. As we are in the era of clinical trials using gene therapy, John is aware of the urgency that such treatments be delivered to those with inherited retinal diseases in Ireland.

Elaine Howley, Director

Elaine Howley has both personal and professional attributes that the Board of Fighting Blindness benefits from. Elaine lives with low vision herself. She also has experience on the Board of the Disability Federation of Ireland, a Diploma in Company Direction from the Institute of Directors and is a current Director on the Board of Dublin Bus.

Elaine is a firm believer in people with disabilities being fully engaged in the leadership of organisations that exist for the benefit of disabled people. Elaine brings her experience and integrity to the Board of Fighting Blindness as well as her commitment to those the organization is there to serve directly through services and indirectly through research and other activities.

Elaine continuously works to encourage people with lived experience of impaired vision to influence and lead organisations.

Suzanne Duggan, Director

Suzanne Duggan has a long family history with Fighting Blindness as she has significant lived experience of sight loss. Suzanne and her sister Olivia were diagnosed with Stargardt Disease as young children which led their mother Geraldine Duggan to become one of the first members in what was then RP Ireland as a parent advocating for research into cures for degenerative conditions.

Suzanne does not let sight loss define her life but it has played a strong part in shaping her. As a board member Suzanne brings her years of personal and professional experience to use in order to try to positively influence the work of Fighting Blindness and ensure that its aims are being met. Suzanne has a facilitative and supportive manner which enables her to form positive relationships with other board members and the wider Fighting Blindness community. Her values are based on doing good, being non-judgemental and treating others with dignity and respect. Suzanne is also well used to reading, processing and evaluating research papers, policy documents and possesses the business acumen to make a meaningful contribution to the board ensuring that ethical and proper corporate governance standards are maintained.

Suzanne is also a lecturer on the Social Care Practice Degree Programme in TU Dublin and specializes in teaching Disability Studies. She has a Masters Degree in Disability and Rehabilitation Studies from UCD and worked for ten years for the Rehab Group supporting service uses with disabilities.

Suzanne has worked in education for many years so she has knowledge and understanding around research, teaching and learning. She sat on her university’s ethics committee for some years. Her area of expertise is the social sciences and she has a strong understanding of the research process and all that this entails from funding to ethics.

Suzanne was a Director on the Boards of the Rehab Group and the National Learning Network for a number of years.

James Kennedy, Director

James Kennedy was diagnosed with RP at a young age. While he attended St. Joseph’s in Drumcondra for his primary education, it became clear that the progression in his disease was slow and so he returned to mainstream education until graduating from DIT in 1998 with a BSc Applied Mathematics.

Now 46, James runs a successful software company with 25 staff dotted around the world. His interest in Fighting Blindness was rekindled following the release of Luxturna as a commercial treatment for RP. He is currently active in promoting the provisioning of treatments for retinal disease in Ireland, and was instrumental in providing key advocacy elements to the strategic plan for the reimbursement of Luxturna – including his voice on national radio and printed media. James was a valued spokesperson on behalf of patients; and reiterated the view to the research scientists at Retina 2021

Dee Hopkins, Director

Dee Hopkins has been involved as a volunteer director with several member-based sight loss and not-for-profit organisations in Australia for over 25 years. Her grandfather lost his sight at aged 13 in a hurling accident and her father became legally blind due to neovascular AMD, so sight loss and its effect on people is something very close to her heart.

Dee has been CEO of the Macular Disease Foundation Australia since 2018, representing the interests of 1.7 million Australians living with sight loss. MDFA’s work is very similar to Fighting Blindness and has four pillars – Prevention & Detection, Support, Research and Advocacy.

She has also been a board member of Vision 2020 Australia. Vision 2020, the ‘Right to Sight’ which is an initiative of the WHO and is an International Agency working for the prevention of blindness.

She has worked closely with International Pharma and has represented Australia on several patient-led advisory councils. She is very familiar with the research and development of the therapies that can prevent vision loss and save sight. Dee holds a Graduate Diploma in Maketing Communications and is also a graduate of the Australian Institute of Company Directors.

Having recently returned to live in Ireland, Dee is utilising her skills in governance, strategy, advocacy, communications and fundraising to make a valued contribution to Fighting Blindness.

Having led several member-focused organisations, Dee brings highly relevant skills, knowledge and expertise to support the important work of Fighting Blindness.