Member’s story 2022: Alpha-1 Foundation Ireland

I joined the Alpha-1 Foundation back in 2017 and subsequently became a member of HRCI, or MRCG as it was back then. I joined the charity sector from private industry with some concern about how I would add value. To say that I was nervous about joining a group of highly qualified and experienced researchers, doctors and charity sector experts is an understatement.

I had skills which I hoped would transfer and that I would successfully contribute to this very resourceful organisation. What I quickly discovered was that my worries were unfounded. I met a team who are very knowledgeable, professional, who are inclusive, passionate about research and involving the patient, and have a strong focus on knowledge sharing, whether that be through formal training sessions, workshops, committees, or policy papers. I also discovered a wealth of support and knowledge through the broad network of charities. I knew I would benefit from being a member and my contribution would be welcomed.

Funding research is key for most charities and through collaboration, training, and the support of HRCI and the HRB I managed to understand and navigate the complicated world of research funding. I found this invaluable, and it helped Alpha-1 Foundation succeed in securing funding for important research on Alpha-1 deficiency. It also enabled me to recommend and implement internal process improvements for research funding for Alpha-1 streamlining the application process for future funding opportunities.

I became a member of the HRCI Board in 2018 and in line with their ethos on supporting charities through learning and knowledge sharing, I participated in board member training on several occasions. This not only proved useful in my work with HRCI but also enabled me to improve the governance and communication within the Alpha-1 Foundation Board and to understand what to expect from a functioning and compliant board.

I welcome and fully support the role of the HRCI in engaging with political representatives and leaders in healthcare influencing at a national level and making Ireland a better place for health research. The result of this has been invitations to many workshops which are in all cases relevant, interesting, and educational.
HRCI holds twice yearly Irish Health Research Forum events which bring people together to tackle many issues in health research and to bring about change.

I also took part in a workshop which was a collaboration between HRCI and the National PPI Network exploring the potential and pitfalls of health research charities partnering on research grants. This was a very successful interactive workshop which clearly indicated that all charities have the same issues when it comes to grant funding applications and highlighted some, if not all, of the changes needed to simplify the processes.

I presented at the Evidence for Advocacy workshop which focused on the HTA process and by using real case studies showed how capturing the evidence of a clinical trial had influenced the outcome for having treatments approved and funded. The workshop proved very educational as the different experiences presented gave a great insight into the pitfalls of presenting bad data and the possible positive outcomes of presenting good data.

There is an endless list of workshops, training exercises, position papers which I could refer to which I found extremely useful and made the development of my role within the Alpha-1 Foundation easier and more interesting. I hope the organisation continues to be recognised for its leadership and I hope others have the positive experience I have had. HRCI events are invaluable to charity members giving everyone a platform to share knowledge and to increase awareness of their respective charities and to learn from the challenges and successes experienced by members.

HRCI are continuing to grow their network of charities and the talent, experience, and total commitment this brings to the research and health arena can only mean a more positive future for our patients.

Geraldine Kelly

CEO, Alpha-1 Foundation Ireland