An interview with Tim Daber on Advocacy on September 24, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I was diagnosed with Parkinson’s in 2016 at the age of 58. I took early retirement on health grounds two and a half years ago. All my career was in the public sector where I held a number of senior professional roles.
Can you tell me more about your advocacy?
I never set out to be an advocate for Parkinson’s. I am primarily a fundraiser, but I also raise awareness of Parkinson’s and that can be considered advocacy. One flowed from the other. To raise funds, I felt I needed to raise awareness of the condition, more of which later.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
The defining moment for me came in 2017, when a professor of neurology said on radio that in his view a cure could be found within the lifetime of some of the people with the condition. I was driving my car when I heard this, and I just had to pull over. Up to that point, it had never occurred to me that there was no cure for Parkinson’s simply because not enough have been invested in finding one.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
I think that people with the condition want people to understand more about Parkinson’s and the challenges that we face daily. That and to be treated fairly. Parkinson’s is perceived as an old people’s disease, and, as such, it appears not to be a very attractive cause for which to donate. The perception is, of course, inaccurate, as there are many people with young onset Parkinson’s. The condition is on track to become the world’s most prevalent neurological disorder unless a cure is found.
How does your advocacy also assist caregivers?
I have never asked myself that question. We all have care partners who may be family members or close friends but thankfully I do not yet need a carer. I guess that the more that is known about rights and entitlements, the easier it becomes for carers to ensure that (Person with Parkinson’s) PwP are getting their entitlement.
What type of training and how long are the programs?
I am not a trainer though training adults was a part of my previous employment. I tend to be invited to give short inputs into longer events. In was invited to be interviewed on Radio Northampton recently in support of Cure Parkinson’s campaign to raise awareness where I got over 6 minutes airtime which doesn’t sound that much but is quite unusual.
What events do you participate in?
I got involved principally as a fundraiser. From the moment I heard that radio broadcast in 2017, I knew that I had to do something to raise funds for a cure. I decided that I would walk the north Norfolk coast path which runs some 64 miles from Sea Palling to Hunstanton. I set a very ambitious target (considering I was a first-time fundraiser) of £100,000. I took my wife’s advice to stage the walk in 2018 to give me more time to plan.
I launched my campaign in February 2018 with a launch party at a local bar and restaurant operated by 2 good friends who very kindly allowed me to use the whole premises for a night and in addition provided complimentary drinks and canapés. Geoff Capes, the Great Britain shot putter and World’s Strongest Man gave the opening speech. I held an auction with good lots including a Methusaleh of champagne, a string of pearls, a Northampton Saints autographed rugby shirt, tickets for the Cirque du Soleil at the Albert Hall with an overnight stay at a 4* hotel, a ladies shopping bike, a BMW track day at Goodwood, an Italian meal and wine tasting in Greenwich and a weekend for two in Florence. I also held a raffle, and a very close friend generously doubled all that was taken on the night. The result was that by the end of the evening I have raised around £15,000 getting the campaign off to the very best of starts.
I was keen for the walk which was to be held in August to end at Hunstanton during tennis week. Hunstanton Tennis Week is the biggest open tennis tournament in the UK attracting up to 1200 entrants. I reached out to the tournament secretary. It happened that he had a good friend who had Parkinson’s and passed in his 50’s. He was pleased to make my campaign the charitable cause for the tournament in 2018.
Meanwhile in West Sussex a university friend whose brother-in-law has Parkinson’s did her own diamond jubilee walk with all the proceeds being donated to my appeal. I walked with her and her supporters for a day.
The walk itself was a very uplifting experience. Several people walked with me, including eight others who did the entire 64 miles with me over four days. We spoke to many people on the way whose lives had been touched by Parkinson’s. We experienced many acts of generosity. One that always stands out in my mind was at West Runton where the proprietors of the Beach Cafe invited our whole party of 20 or so walkers in for a hot drink and a snack and made a cash donation in addition. It really did a lot to restore my faith in human nature. The cash registers continued to ring for some weeks after the walk and when they finally stopped just under £76,000 had been collected. I was made the Cure Parkinson’s Trusts fundraiser of the year for 2018 as a result.
I managed to attract an amount of media coverage by being interviewed on BBC Radio Northampton before, during and after the walk. The story was also covered in local and regional newspapers and even got a mention on BBC Look East.
How can others also become advocates for awareness?
Everyone has their own unique experience. Consider what yours is and target your efforts accordingly. There is no training manual so just go out there and do what seems to you to be right.
What would you like to see as a future goal for your advocacy?
I have been involved in a few subsequent events, most recently, I completed another sponsored walk this summer and made the target amount which was £5000. En route I recorded a video message for Cure Parkinson’s. However, I have achieved what I set out to do. I am not actively looking to extend my role though if something interests me and I feel that there is some value I can add then I can’t rule out the possibility I may become involved.
What effect can your advocacy have on an individual with Parkinson’s?
A number of people have said that I have been an inspiration. All I know is it felt to me like something I had to do. It has been both rewarding and humbling. I have been asked whether I ask the question “why me” but I think that feelings of bitterness or whatever will only harm me and those close to me and will serve no useful purpose.
How can someone get in touch? What is your website?
I don’t have a website but I’m sure that if people try hard enough, they can find my Facebook page and contact me via that.
How can we better fundraise to support a cure for Parkinson’s?
I have been contacted by a few people who have been intent on fundraising for Parkinson’s and wanted some tips. People set fantastic physical endurance challenges for themselves but fail to raise nearly as much as I think their efforts deserve. My no.1 tip is to allow enough time. You need to get out there and let people know what you are doing. Whether that is friends and family or the wider public it all takes time. It is no good planning to, say, cycle the length and breadth of the country and expect to raise thousands if you propose to start next week and you have yet to get any sponsorship. I started planning for my August 2018 walk more than a year before the event. And you must put yourself out there, out of your comfort zone. It is uncomfortable, at least at first, to contact both acquaintances and total strangers and ask them to contribute but you would be surprised at how generous people can be. You only have to look at the list of auctions lots I put together to see the proof of that.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I take the view that my job is to play the hand I have been dealt to the best of my ability. I like to think I am making a reasonable job of that. I can only hope that others will follow suit.