How do we decide which studies to fund?
Twice a year, the Alzheimer’s Research UK Grant Review Board meets to assess potential new grants. We get many grant applications each year from researchers looking for funding for their studies. The Grant Review Board exists to make sure we’re funding the most promising, practical and cost-effective studies, that will bring us closer to beating dementia. After much deliberation, the board decides which studies we fund, and which we don’t.
We always make sure we have ‘lay’ people present who have had personal experience of dementia. Alzheimer’s Research UK Champion Fred Walker has attended the last three Grant Review Board meetings as a lay person.
Fred lost his wife, Joan, to Alzheimer’s disease in 2010. She was diagnosed at just 67 and passed away after a five-year battle with the condition. Fred cared for Joan at home right until the end.
It’s important to have people like Fred at Grant Review Board meetings to assess the practical aspects of the studies being looked at. Fred uses his experience to identify things that could be difficult for people with dementia, such as lengthy testing, and can give suggestions of things that may help, like having loved ones or carers present.
After the last meeting, Fred wrote the below letter about his experience. We wanted to share it with you so you can see what goes on behind the scenes.
An Open Letter to the Grant Review Board
I’m sure my journey through Alzheimer’s is not unique. I nursed my wife, Joan, for five years through the disease until her death in my arms at home. I then had a choice of directions: I could just walk away having had my fill of heartache and frustration or I could try to influence the course of research to hopefully preclude others from having to make the same journey. I chose the latter.
At the age of 73 I climbed Snowdon, at 74 it was a free-fall skydive, at 78 a wing walk. I wrote a book, ‘Alzheimer’s: An Engineer’s View’, and I give PowerPoint presentations to any club, society or group of people who will listen. All book sales, speaker fees and donations go direct to Alzheimer’s Research UK.
In the main, Alzheimer’s Research UK volunteers and fundraisers have had the same experience as me. Alzheimer’s brings with it the devastating prospect of someone you love becoming like a highly dependent small child, whilst the companion with whom you shared so much is gradually being lost to you. The only way we can fight back against this disease is by raising money to fund your research.
Having attended three Grant Review Board meetings, I am once again reassured by the energy and integrity with which you adjudicate on the many and varied applications for funding. You always extract maximum benefit from every penny we raise, and the number of times I heard, “is this value for money?” was impressive to say the least. Consequently, we have an implicit trust in your judgement and commitment.
So, on behalf of the thousands of volunteers like me, I want to thank you for your time, effort and expertise in the work you do to improve diagnosis and find drugs that will slow and hopefully stop this most obscene of diseases.
I know that all volunteers and supporters will continue to raise funds for this vital work.
Volunteer Champion, Alzheimer’s Research UK
About the author
Fred’s wife, Joan, had a four year struggle with Alzheimer’s and died in 2010, aged 70. Since then he has been a tireless campaigner, raising awareness of the need for more investment into research for this devastating disease. Fred has involved his local community in fundraising events and has raised thousands of pounds for our world-class dementia research. A retired engineer, he has also written a book entitled ‘Alzheimer’s: An Engineer’s View’, with all proceeds being donated to Alzheimer’s Research UK.
Fred – I’m humbled by your comments. ARUK have always tried to maximise every penny raised towards a cure for dementia and I’m proud to have been part of this process for the past 7 years. You’re an absolute inspiration from your fund raising efforts. Keep up the good work. Thank you!