Fighting Blindness, Ireland International Agency of the Month

Date Posted: 02/01/2017

By Maribel Steel, International Agency of the Month Correspondent and VisionAware Peer Advisor. VisionAware is featuring international agencies in our field throughout the year to meet the needs of the world-wide audience that VisionAware embraces.

Fighting Blindness logo

Overview

Fighting Blindness(FB) is an Irish patient-led charity funding research into treatments and cures for blindness. They provide a professional counseling service for people and families affected by sight loss and are extremely active in the area of advocacy and patient empowerment at a national and European level. Fighting Blindness is a patient-led organization representing the 224,000 people in Ireland who are living with severe vision loss. The organization strives to ensure that people facing the degeneration of their sight, whether they are far into that journey or have been recently diagnosed, are not alone.

Mission and Vision

The mission of FB is to cure blindness, to support those experiencing sight loss, and to empower patients.

  • Cure: Promote and facilitate the development of treatments and cures which are accessible to all patients affected by sight loss.
  • Support: Develop the counselling service into a nationwide program, ensuring access and support of the highest standard is available to patients and family members who are living with sight loss.
  • Empower: Work in partnership with all stakeholder groups in the areas of health, science, industry and government to empower patients and to achieve the greatest impact in the global fight against blindness.

Brief History and Services Provided

FB started in 1983 as a group of families affected by sight loss coming together for support. The agency is now a global leader in the search for cures and treatments for genetically-inherited and age-related forms of blindness.

picture of doctor looking into microscope

In 1989, researchers in Trinity College Dublin, funded by FB, located the first known gene responsible for causing Retinitis Pigmentosa (RP). To date, FB has invested more than €15 million into research in Ireland, covering over 70 projects and is proud to be an organization enabling the progress of research that may not otherwise have been funded.

FB provides information and support for people and families affected by sight loss through the Insight Counselling Centre. The centre was established by Fighting Blindness in 2002 to help people cope with the challenges of being diagnosed with, and living with, conditions that cause sight loss.

Insight Counselling Centre Services

Losing vision can also impact family and friends, so the service can help those individuals adjust to new challenges as well. Services offered at Insight include:

  • professional psychotherapy
  • telephone counseling
  • peer support

Meet Tony Ward – Head of Fundraising

standing pose of Tony Ward

I first came across FB 20 years ago in 1994 having just been diagnosed with a degenerative eye condition called retinitis pigmentosa. As a 28-year-old this was a huge shock but finding a patient-led organization like Fighting Blindness brought me in contact with a huge number of people, all in similar situations with sight loss. I’ve been involved ever since, as a member, volunteer and I’m now head of fundraising, a role I’ve held for just over two years. I really enjoy my work and it definitely makes it easier to communicate with people when you can describe why you got involved and how funds raised can help many people whose position you are familiar with.

Funding of Services

Fighting Blindness is 90% funded by the public through donations and fundraising. According to Mr. Ward, "As FB membership grows and therapies come ever closer, funding of our services will come increasingly under pressure. We are constantly working to ensure that sustained funding is secured for the provision of services to all patients."

Goals and Direction in 2015

Fighting Blindness would like to expand the counselling service to a nationwide program that provides an efficient and meaningful service to all people in Ireland affected by sight loss. This is especially important in light of FB's Target 5000 project which aims to provide gene sequencing for everyone in Ireland who has a genetic retinal condition and build a National Patient Registry for retinal degenerations. FB is connecting with new people every day through this project and must ensure that people have the support and information that they need.

Keeping Patient Members Up to Date

Fighting Blindness involves patient members in direct activities and in national projects, including discussion groups and health forums. They keep members informed and up-to-date about current research developments and are developing infrastructures to enable Irish patients to participate and have access to clinical trials when the opportunities arise. The agency advocates for sustainable infrastructures to expedite the development of therapies and to ensure equitable access to these therapies when they become available. FB strives to achieve this by providing access to support in many formats, especially through the Insight Counselling Service described previously.

Maribel Steel: My thanks to Caitríona Dunne, Communications Officer with Fighting Blindness, who kindly provided this information to be VisionAware’s International Agency for the Month of February, 2015.

For more information or to contact Fighting Blindness, Ireland, here are some links to their webpage and social media pages:

Fighting Blindness

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