The Case for Hope - 3 November 2009

Today Karen, Rob and I visited Professor Robin Franklin at the University of Cambridge to talk about the HOPE his work may offer people with Multiple Sclerosis. Robin has the look of a movie star who women are going to fall in love with and men are going to look for favourable comparison. His office evokes academic enquiry, deep study and intellectual sparring.

Old classic books in cloth covered blue and red covers adorn each wall. There is an old 60’s looking microscope on a bench surrounded by papers and on the wall an antique picture of a brain in a gold frame.

Underneath are grey metal filing cabinets crammed with ideas captured after hours of reading, thinking and debating until the perfect paper is worthy of its place. He has a neat and simple desk with more papers, fountain pen and an old pc screen and keyboard all beneath a halogen lamp illuminating the next moves he and his team can make on one of the cruellest of neurological diseases.

We sit opposite him on a comfortable old leather sofa with creases and cracks reflecting the countless conversations he has held. Looking for ways to convince people to join him, fund him, challenge him and find a way beyond the frontiers currently known. He started on a journey to become a vet. After qualification and 6 weeks in Grimsby he moved to Cambridge to pursue a PhD and then an obsession with the biology of the brain. His interest in the most complex structure known to man and his desire to unlock the secrets of the repair processes that are working and failing has kept him consumed for over twenty years. In this time he has built a truly world class neuroscience team focused on working out how the brain and central nervous system can repair itself when damaged by diseases such as Multiple Sclerosis.

Robin’s enthusiasm, optimism and energy are infectious. He takes us through the unfair battles that are fought in the war for funds. The political and emotional support behind Alzheimer’s, Parkinson’s and Huntingdon’s diseases is reaping a disproportionate share of funding versus that given to Multiple Sclerosis. The press seem to sell more papers and gather emotional support around the awful plight of these diseases that attack the elderly. They seem less interested in telling the story of a disease that picks on the young, even children as young as 8. Many of these young people then go on to a experience a lifetime of steady or fierce decline, a continuous fear of the future and some terrible ways of ending their lives. With a fairer share of funding, or new increased levels of resourcing, there is every reason to believe that the science of brain repair will develop treatments capable of giving HOPE to people who have Multiple Sclerosis today.

Rob and I have worked with people earning multiple million pound salaries and bonuses each year. We are stunned to know that some of the academically brightest people on earth, pushing forward the boundaries of science that will benefit all of us earn £35k per year. Robin sketches out how nerves are crippled by MS and the work his team is doing to discover the path to repair. We meet some of his staff around the lab. Everyone is busy and active working on their piece. There is a good feel about the place as it hums along like a finely tuned machine. This is a collection of amazing talent from countries including China, Belarus, Denmark, France, USA, Ireland, New Zealand, Germany, Greece, Denmark, Iceland, and the UK. At one end of enquiry mankind is searching to go beyond the boundaries of the known universe. Here the journey of discovery is in to the complex micro world of the most elemental parts of ourselves. We want these people to succeed and we want to support what they do.

We are daunted by the scale of the challenge Robin faces. He needs substantially more resources to quicken the pace of progress. Equipment is astronomically priced with huge running costs. People are on short term contracts with the risk of fragile budgets around them. We wonder at the impact we can make by raising more funds. We talk of raising the profile of this work and getting on the Governments agenda and more stories in the press. We talk and say we can make a difference and raise HOPE for people who have Multiple Sclerosis today. Our step will be a small one but our gesture can inspire others to get involved and raise public awareness. If our one small step can get a thousand others to make one small step then suddenly 100,000 people with MS in the UK will have renewed HOPE for the future they and their families will endure. Our small step is Rob and I will walk 1000MILES4HOPE in 2010, communicate with at least 10,000 to raise the profile of Multiple Sclerosis and raise £100,000 for the brightest talent Robin can attract to this admirable cause. We believe as the case is understood others will join this battle in a war that can be won.

A Hertfordshire Walk

Yesterday was Sunday and I got absolutely drenched walking ten paces to my car. Knowing we had planned a 12 ish mile walk for today I was weighing up the possibility of a game of Bridge at Welwyn instead. I couldn’t call and make the first move. That would appear wimpish and show a lack of commitment to the preparation for 1000Miles4Hope. So I waited for the call that never came. Rob is committed and inspires me to be the same. This morning the sun rose for a beautiful autumnal day. You could not ask for better walking conditions. Off we set along the Icknield Way (the oldest road in England), over to Luton, round back to the village of Lilley (where Peter Lilley is the MP), lunch on the Green Man at Offley and 17.5 miles later, that is 12 ish miles, we are back in Pirton. At that rate 1000 miles would become 1458 miles so we are going to have to get better at planning and map reading. By the time we are back, the sun has set and our feet are crying out for a massage and telling us we need to get fitter.

We discovered an early secret from the first leg of our walk. We talked about what Rob had learnt on a photography course he had been on over a recent weekend. Things like get close, then get closer and most important of all get closer still. When you are close enough make sure you have got rid of any zoom lenses in your bag and replaced them with ones that are five times the price. Then capture the moment when it comes. Not before or after but make sure you snap at the precise instant it is there. At a junction we stopped to take a pause and I asked Rob how far he thought we had walked. ‘I’d say a couple of miles’ he said. We had completed 3.8 miles. So the secret is to make sure we have fascinating subjects to talk about as we walk. If we can do this then 1000 miles will feel like 526 miles. However, we will also need to measure what we do walk or, with this error of estimation, the 1000 miles we are planning could become 1900miles.

We walked on and were on the lookout for unexpected sightings for a walk in the Hertfordshire countryside. We did not have to wait long when we came across a herd of elephants. There were between eight and ten of them proceeding in a line up ahead of us. You will agree this is a surprising sight in Hertfordshire on a sunny autumn day in November. Further along we came upon a formula one race track with the most amazing bend you wanted to take on at full speed in your fastest car. These sightings passed the time and distracted us from any aches trying to make their presence felt as the miles built up. Looking back who would have thought that asking Rob to describe some clouds in the sky would conjure up the image of elephants. Then a little later seeing the bend in a field as something like a great bend on a formula one track that you want to take at full speed.

On our final leg we came upon a curious pile. There were seven crushed Carling Black Label cans piled on charcoaled branches and one sitting alone a couple of feet away. We wondered what story went with this gathering. Speculating on the conversations round this now cold and finished camp fire we wondered what sect or plans were conjured here. Why seven cans neatly in a pile and one off to the side. Was someone spurned from the group or did a weasel come along and play football with one can? We will never know but like the idea of the weasel the most. Later on we passed a deep tunnel and imagined this might be his hole. Hopefully he is snug in his bed resting after his game. Just like we will be tonight after our fresh air, surprising sightings, conversations on many subjects and our 12 ish mile walk.

Len, 2 November 2009