#Victor4RP. Marathon for Retinits Pigmentosa


On the 14th October 2018 Victor will run the GENERALI MÜNCHEN MARATHON. Victor is blind as a consequence of Retinitis Pigmentosa, a rare genetic disorder that involves a breakdown and loss of cells in the retina.
There is no cure or threatment yet and this disease can lead to blindness, like in his case. NoisyVision will support him to promote his initiative and raise awareness and funds which will be donated to RP Fighting Blindness

IMPORTANT UPDATE (12 Oct 2018): We have taken the strategic decision to divert the efforts of our campaign. We are collaborating with RP Fighting Blindness  UK. Therefore, thanks to all the donations, we contribute to the committed efforts to funding and stimulating high quality medical research aimed at understanding the causes of RP and developing and evaluating new treatments ]

The challenge: we set the goal at 42195 €. For every euro we raise we back up a metre of Victor´s Marathon.
Victor is training hard to complete the full Marathon.
Will we be able to achieve the same goal?

How much does it cost you to run one metre?

Only ONE euro.

And that euro can make a big difference lot for people with Retinitis Pigmentosa.
Let´s do it.

#1Eurox1Metro #Victor4RP #GMM2018

Make a Donation here

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Hi Victor, can you introduce yourself?

My name is Victor. I come from Vitoria, in the Basque Country. I have been living in London for the last 12 years. I call it home, now I am a Londoner. I recently graduated from a Masters on Public Policy. Right after Finishing my Degree in Politics and International Relations.

How much do you see?

I have not useful sight. Sometimes light perception and movements.
However this is not good enough to walk around without orientation aids. I use a white cane to navigate around.

What are the reasons that made you decide to run the Marathon?

Why the Marathon? Why not!
About a year ago friend of mine ask me if I would like to run, he has watched some videos on youtube about Guide Running. I saidyes, why not.
Two days after, we were running. I could stop laughing. I giggle
during the 45 minutes that run lasted. I felt happiness, freedom. You cannot imagine the sensation that running gave me. I feel unstoppable. There is no limits there, you run and you are free. It doesn´t matter if you cannot see. You don’t need your sight to run.
feel unstoppable. There are not limits there, you run and you are free
From then we continue running at least once a week.
Then, it come out the opportunity to race for a Half Marathon. I took it. Then, six months after, another Half Marathon come along and I did it again.
Than, after that, the natural next level was the Marathon. Here I am now, preparing to run my first full marathon.
During the Races I took part on, it surprised me the amount of support that I received only for beeing blind. My Guides told me they don’t receive as much cheering when racing on their own. Not sure how to interpret this. Many people say that is inspirational, that is so brave of me for doing this. However, when I heard this I cann’t stopthinking that is quite patronising.
Just because I am blind does meant that everything I do is
“inspirational” or “brave” or “courageous”.
The main difference is that I do it with no sight.

How often do you train for the Marathon?

Currently I’m training three or four times a week.
I am trying to have at least two sessions per week. One for speed and another for long distance, which means anything above 10 kms.
This is gradually increased weekly.
I also have to do one strength training, lifting weights and two or three cardio trainings per week. This is to keep my fitness level up.
So, as all this training will paying off for my marathon, you could say that I have 5 sessions per week of training for Marathon. 2 runs, 2 cardio, 1 weights.

I know you are also rowing, how comes? You like sport I guess, And what do you like about it?

I discovered rowing a few years ago. Physically is very demanding sport. It  is far too much technique involved on it to be an easy sport.
Then, why would I put myself in such a difficult sport?

Well, first I like challenges.

Second and most important: can be an inclusive sport. I can compete at the same level as sighted people. Although there is an special category for disable people (adaptive rowing) is not compulsory to get into that category. Therefore, I can participate in any official competition along non-disable people. It is a way to make it into main-stream, rather than on the “special” category where only disable people participate.

What are the challenges of training and running when you are blind?

There are many challenges. Or perhaps different ways of doing the same thing.
First, if you want to run outdoors you need to make arrangements with one of your guides runners.
I haven’t learn to run on the treadmill yet.
Then, once on the run, I believe is more challenging for the guide than for me.
My guide runner is required to keep me informed about our route in advance. For example, imagine that we are running in a straight line, but there is a turn to the right and then continue straight. Something like an “L” shape. The communications from my Guide Runner will be as follows:
“In 50 meters will turn right 90 degrees”. Then, “10 meters” as we are approaching, then “we turning in 3, 2, 1, turn now,  right, right, right, right, straight!”. That would be one turn done.
There are many other commands, for example how to avoid an obstacles “move to me” or “move to you one step”. So we can avoid other people, or things that are on the way: holes on the pavement, or puddles after a day of rain. Other times, there is the need to avoid head height obstacles, hanging branches of trees, then my guide would  say “Duck” and I make the duck to avoid hitting my head. The important thing is that I know what we are going to do before we do it. Of course, in race conditions, this become more challenging as there are many external factors you cannot control: high adrenaline of the racing day, thousands of people around you, both running and cheering, possible a new route.
The more runs you do with your guides, the more efficient your communication becomes.
I am very grateful with all my guides, and I try to keep them happy. After all they are enabling me to run.
Probably, the more challenging situation is the people around when running. Although I wear a t-shirt with BLIND in huge capital letters, not everyone realize that you cannot see and therefore you won’t navigate around them. So, sometimes I run over people who were expecting me to avoid them. However, this is not that uncommon for me, as many times on the street people walk into me, despite my white cane clearly indicating me as blind.

Good luck Victor!


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4 comments from the community

  1. Infatti. Le raccolte fondi oltre ad avere soprattutto un beneficio concreto, servono anche a diffondere la conoscenza, informare. Bisognerebbe parlarne ancora di più, ma alle volte sembra che siano proprio i diretti interessati quelli che fanno più fatica a promuovere queste iniziative.

    Grazie per tutto quello che potrai fare per condividere questo progetto

  2. Anch’io sono affetta da RP ormai sono passati 21 anni da quando ho saputo dell’ esistenza di questa mia compagna di vita…ma non mollo, spero e confido nella ricerca, perché deve esserci un modo per arrestare “la bestia” se non per me, ma per nuove generazioni….si può vivere con qualsiasi handicap….ma non senza la luce negli occhi.

  3. Grazie Stefania del tuo commento. Purtroppo lo abbiamo visto solo ora. La campagna é ancora in essere perché vorremmo chiuderla con 50000 euro raccolti. Speriamo. Ma é piu´dura la lotta comunicativa che la battaglia quotidiana? 🙂

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