Please note this blog talks openly about death.
ALS is the most common form of MND and these terms are used interchangeably in this blog.
Every year the Patient Fellows Symposium Programme helps people living with MND, from all over the world, to participate in the International Symposium on ALS/MND. This is the largest annual gathering of MND researchers and healthcare professionals dedicated to MND research in the global calendar. Attending provides, for those who the research will benefit, an opportunity to have a firsthand view of the most recent and promising research being undertaken by researchers across the world.
Dr Rick Nelms was part of the Patient Fellows Symposium Programme in 2022, attending the 33rd International Symposium virtually.
Dr Nelms is a biologist and educator who has been diagnosed with MND. While the MND diagnosis unfortunately led him to retire early from a much-loved career, he has been determined to remain positive. This led to him to “paint hope without brushes” through his computer, tablet and smart phone and become a passionate MND advocate.
We recently spoke to Dr Nelms about his experience of attending the Symposium and why he decided to be a patient fellow.
Why did you decide to apply to be a patient fellow?
I decided to apply to be a patient fellow at the 33rd International Symposium on ALS/MND because I believe that I can be a well informed and effective advocate in the MND world and play a role making the science underpinning MND accessible to ordinary people. This includes both the ordinary people who make up our government and the ordinary people who develop MND and want to know what is going on inside the body and what anyone is doing about finding a proper fix for it. I have a proven track record as an effective advocate for science education, and think that, with the understanding gained at the symposium, will be able to become a much more effective advocate in the world of MND. All sorts of people from all sorts of backgrounds can be effective advocates, for which the greatest single asset is motivation. I just happen to be a very scientifically literate advocate with a background in education including students with specific learning difficulties and those intending to study at Oxford or Cambridge University.
I have lived all my life on the autistic spectrum, and that gives me a unique perspective on the world. I love solving intransigent problems in biological science and other areas of life. So, with characteristic modesty, I believe that I can make a contribution to developing solutions to neurodegenerative conditions by providing the kind of thinking that is characteristic of people who live life at a jaunty angle to the life lived by most people.
The Patient Fellow programme reawakened my desire to be a working scientist once again!Dr Rick Nelms
Tell us more about your motivation to be an MND advocate
My motivation? The vivacious and brilliant child of one of my oldest and closest friends, and a person who in themselves I admired and loved; a person who graduated as a professional, and 4 years later was dead, killed by MND. A person who danced around their living room with one of my children to a well-known children’s song; the organist had to learn the tune for the person’s funeral. My friend is still loyally my friend. My friend’s lovely wife, who retired early to care for the person we all loved so much, still finds being with me just too hard, too close to home. You want motivation? I’ve got motivation. My mother died recently from Alzheimer’s disease and we know that the drivers of MND and Alzheimer’s have some similarities and that the same labs are doing the same research to work towards a world free not just of MND, but of all neurodegenerative disorders; Alzheimer’s Disease, Parkinson’s Disease group, MND and more. Oh yes, I have got motivation.
If I needed more, I had the best job in the world, working for the International Examination board at Cambridge University, part academic, part assessment designer and most exciting of all, part international curriculum designer and trainer of teachers. I was making a tick list of lovely places to take my wife when I retired, incredible things I had seen and experienced. Until one evening I stood on a beach in Mauritius and took photos of the sunset and wept. I had fallen twice during the training, lost the top few notes from my tenor voice and I had funny wriggly things under my skin on my legs, fasciculations. I had a pretty good idea what it meant, but it took 5 years to get a diagnosis. We are finally sure now that I have PLS (primary lateral sclerosis), a rare form of motor neurone disease that means I live life in a powerchair and paint using a computer because I can’t hold a brush – I paint hope. But I will never take my wife on a submarine to see a reef, or fly round Everest in a little plane, or walk with her along the Great Wall of China. Oh yes, I have got motivation.
Dr Nelms now “paints hope without brushes” using his computer, smart phone and tablet.
What were your highlights of the Symposium?
I enormously enjoyed the presentations by so many fantastic young scientists, some of whom were PhD students, and were able to articulate so clearly what they were doing and why. For me, perhaps the most impressive was the award receipt speech on non-coding DNA by Dr Chen Eitan, a Neurogenetics researcher and Postdoctoral Fellow at the Weizmann Institute of Science, Rehovot, Israel and the winner of the Paulo Gontijo Award for young researchers in MND, 2022.
The other highlight was the number of times I heard the words, ‘we shared our data with’ or ‘we collaborated with’. The last time I heard scientists speaking in those terms was in particle physics, during the successful search for the Higgs Boson, when physicists realised that they could not solve the problem alone, and papers with hundreds of authors became commonplace. The key word in the preceding sentence is ‘successful’. I was filled with optimism and joy at the Symposium because it became clear that we are almost at the point where some of the multifactorial causes of MND are known and we can say that if you acquire enough of these, your motor neurons may begin to die.
This brings me on to the next highlight. So many of the unsuccessful drug trials of the last twenty years have shared some common features which drug trial designs are beginning to leave behind. One feature of these unsuccessful trials was the lack of effective biomarkers to replace unreliable rating scales and binary survived/died measurements which have been the only means of judging success that some regulators will accept. We are steadily developing better biomarkers that measure success as it is happening, and gradually winning the battle to persuade regulators that some of these biomarkers are more reliable than the existing system.
It was great to hear about a range of ongoing trials, some of which end with the therapeutic being ineffective, but many which are in the early stages and are looking very promising. Rather than attempting to remember and recall lots of confusing names, I chose the presentation I enjoyed the most, by Dr Shyuan Ngo (University of Queensland), about the MetFlex trial. It is hoped that this repurposed angina drug, trimetazidine, will reduce hypermetabolism in 50% of sporadic ALS cases and therefore reduce damage. It is great to be able to tell people that the phase 2 trial will be reporting back from June 2023 onwards, and there is a chance that we shall have a new effective drug which slows disease progress in 50% of sporadic ALS patients as well as those with familial genetic causes.
I cannot work in a lab any longer, but I can still think, innovate and provide charismatic and effective leadership in the science domain, and thus contribute to bringing a world free of MND closer.Dr Rick Nelms
Would you recommend other people living with MND to apply to be patient fellows?
Yes, without hesitation. To be able to get a flavor of how much research is being done and how much better the situation is now than it appeared to be even two or three years ago is very good for my own wellbeing. Being able to pass on this on to other people you meet in MND groups and online is even better for your personal wellbeing. It does not matter if you are a specialist like me or someone who has spent their life running a home or working in areas completely disconnected from healthcare, you can still pick up enough of the positive news from the Symposium and the preceding Alliance meetings. This can help you to be able to be an even more effective advocate, help other people who have MND and persuade ordinary people unaffected by the condition that it is one worthy of their fundraising efforts. I have made some friends through the experience and networking opportunities and hope to build on some of those friendships into the future.
The Patients Fellow Symposium Programme is now accepting applications for the 34th International Symposium on ALS/MND. To find out more about the Programme and how to apply please go to the Patient Fellows Website.
We would like to thank Dr Nelms for talking to us about his experiences of the Patient Fellow Symposium Programme and the International Symposium on ALS/MND.