Since 1983 Fighting Blindness has been a focal point for people affected by sight loss, providing the opportunity to meet other people in similar situations, an invaluable counselling service for people affected and their families, as well as giving hope for the future with a huge commitment to research into treatments and cures for blindness.
With over 90% of funding coming from many Irish individuals and companies we are indebted to the generosity of the Irish people. We are also grateful to the many supporters we have from across the globe. Here are some stories from people who have been helped (and inspired enough to join the team!) through the work Fighting Blindness does.
“At the age of 28 I was diagnosed with macular degeneration. During the previous four years my sight had been deteriorating and I was finding work and general day-to-day tasks increasingly difficult. This was a very frightening time of my life. Although the diagnosis was a complete shock, in some ways it was a relief as at least I now had an explanation for what was going on.
My sight has been deteriorating since then, for almost 20 years at this stage. I have had to make constant adaptations to my life, starting to use a cane for mobility, getting adaptive software for my computer and relying on others for assistance. However I also live quite an independent life and am hugely grateful to my family, friends and professional colleagues for their assistance in making this possible.
By almost complete coincidence, the day I was diagnosed I heard about Fighting Blindness. I went along to a meeting, I was very uncertain about what to expect – perhaps, I thought, lots of blind people bumping into each other! However I couldn’t have been more wrong – I met a variety of younger and older people, mostly very mobile and mostly very positive. It was great to be able to talk to others facing similar challenges and also great to encounter an organisation that was so determined to support people affected and to invest in the future of finding treatments.
I’ve pretty much been involved in the organisation ever since and it has been a real positive when compared to the possible negative of losing one’s sight.”
“Losing your sight is like losing someone you love. It’s like part of your heart is gone. You have to adapt both emotionally and mentally.”
Gerry Kerr and his wife Collette live in Dublin with their two daughters and a guide dog called Orva. They learned that Gerry had Retinitis Pigmentosa (RP) while they were dating and together they have learned how to navigate life with RP and embrace a new chapter after Gerry’s sight degenerated.
“My work was my passion, so I had to reinvent myself. I was going through a difficult period and reflected it unconsciously on my partner. Collette told me I had to change, so I did. I’ve been involved with Fighting Blindness for 28 years. They have an absolutely amazing counselling service for people with sight loss. I began to understand the stages you go through: shock, anger, resentment, acceptance and healing. I’m really proud of Collette—she went through this with me and is now starting a support group for partners and spouses with the Insight Counselling Centre at Fighting Blindness.
Fighting Blindness helps people who are affected by sight loss and invests in research that will ensure future generations are not affected by genetic conditions like RP.
The research that Fighting Blindness fund is incredible and gives me great hope that one day soon we will find a cure.”
“Back in January 2006, when our son Adam was aged 18 months, we noticed a slight turn in his left eye. We thought it best to get it checked by a specialist, fully expecting that it would be simple to diagnose and resolve.
We were devastated when the consultant informed us that our son may have a rare eye condition. Furthermore, he had a haemorrhage in his left eye and would need to undergo immediate surgery to have it removed.
We never heard of X-Linked Juvenile Retinoschisis or XJRS before, but following genetic testing it was confirmed to us that this was the diagnosis. XJRS is a juvenile form of macular degeneration. Adam’s condition is extremely rare and we did not know of any other person with a similar condition.
To say our world fell apart was an understatement and although our family network were extremely supportive we did not know who we could turn to for professional help.
The first contact I had with Fighting Blindness was in April 2008. I made the connection with Avril Daly following publication of a news article on gene therapy for LCA.
Avril spoke to me about Fighting Blindness and how the organisation supports research for treatments and cures for blindness. Avril also told me about the counselling services that Fighting Blindness provides.
I availed of the excellent counselling services and this support network was instrumental in helping me through an extremely difficult time. They also introduced us to experts in the retinal research field which in turn led to a pivotal meeting with Dr Paul Sieving in the Kellogg Eye Institute in Washington DC. Dr Sieving was conducting research into a cure for XJRS.
Adam was accepted onto two clinical research study programs led by Dr Sieving and without the support from Fighting Blindness, these meetings would never have happened.
Looking back, when we were told there was no cure for Adam’s condition it actually strengthened our resolve to push for progress in research and ultimately a cure for his condition. I believe Fighting Blindness truly supports this goal with the significant investment it continues to make in research and support services.
Fighting Blindness is an amazing organisation and I’m proud to say I’m part of it.”