louise pilbeam, bbc news. alan towart has motor neurone disease and raises money for mnd charities. hejoins us now. thank you for being with us. it is a degenerative disease and its pace varies from case to case, how much can you tell people how much it impacts on the daily life of those who live with it? it is impacts on the daily life of those who live with it?— impacts on the daily life of those who live with it? it is massive. as ou who live with it? it is massive. as you said. — who live with it? it is massive. as you said. it _ who live with it? it is massive. as you said, it affects _ who live with it? it is massive. as you said, it affects people - who live with it? it is massive. as you said, it affects people at - you said, it affects people at different rates. i was diagnosed just over four years but now i need help with washing and dressing. cutting up food and things like that, so it gets more difficult as time goes on. in

that, so it gets more difficult as time goes on-— that, so it gets more difficult as time goes on. that, so it gets more difficult as time aoes on. , ., .,, time goes on. in terms of losing the vafious time goes on. in terms of losing the various physical _ time goes on. in terms of losing the various physical faculties _ time goes on. in terms of losing the various physical faculties you - time goes on. in terms of losing the various physical faculties you have, | various physicalfaculties you have, is it a common experience of all sufferers their mind remains intact even as their body degenerates? absolutely, your mind is stilljust the same and you can become almost locked—in as you become more disabled. my wife thinks i am a little bit more switched on than i used to be, maybe my senses are improving, but your mind stays the same. �* .,, improving, but your mind stays the same. �* ., ., improving, but your mind stays the same. ~ ., ., , , , same. almost all the other senses have become _ same. almost all the other senses have become more _ same. almost all the other senses have become more acute, - same. almost all the other senses have become more acute, what. same. almost all the other sensesl have become more acute, what you same. almost all the other senses - have become more acute, what you are left with, your body adds capacity to? �* , , ., , left with, your body adds capacity to? �* , h, , we left with, your body adds capacity to?_ we talk - left with, your body adds capacity to?_ we talk about. left with, your body adds capacity | to?_ we talk about the to? absolutely. we talk about the brain as an _ to? absolutely. we talk about the brain as an organ _ to? absolutely. we talk about the brain as an organ of _ to? absolutely. we talk about the brain as an organ of the _ to? absolutely. we talk about the brain as an organ of the body - to? absolutely. we talk about the brain as an organ of the body that| brain as an organ of the body that we know comparatively little about and what we do know is tiny compared to what we don't know about it. where is the most productive area of research from the people you have talked to who are researching this

area at the moment? where would this money most usefully be applied? it has got to go to the scientists who are making such good advances. everybody feels they are just so close to something and this extra funding will go and help their research. you just have to look at how the vaccine the covid—i9 was developed in such a rapid time with joining forces. perhaps this could push the cure for mnd just a little bit closer. push the cure for mnd 'ust a little bit closer. ~ ., push the cure for mnd 'ust a little bit closer. ~ . , ., ., ., , bit closer. meantime, you and others with the disease _ bit closer. meantime, you and others with the disease are _ bit closer. meantime, you and others with the disease are having _ bit closer. meantime, you and others with the disease are having to - bit closer. meantime, you and others with the disease are having to live . with the disease are having to live with the disease are having to live with the disease are having to live with the condition and you know by the time frame people operate under, getting anything meaningful in terms of delaying the condition or curing it isn't probably going to come in your lifetime, if only it would. i know from having a relative who died from mnd, one of the big struggles families have to deal with is there

is very limited support, there is tremendous support from charities and volunteers. although large case numbers and terrible for the people involved, they are comparatively small when spread across the population. small when spread across the population-— small when spread across the --oulation. . . ., , population. that is correct, only about 5000 _ population. that is correct, only about 5000 people _ population. that is correct, only about 5000 people in _ population. that is correct, only about 5000 people in the - population. that is correct, only about 5000 people in the uk i population. that is correct, only i about 5000 people in the uk that population. that is correct, only - about 5000 people in the uk that are diagnosed or living with mnd at any one time. some of those people can die within months of being diagnosed and then you people are diagnosed, so it stays around 5000 in the uk. that has been half the problem of getting the funding and the research because it seems to be effecting such a small population. but people can pass away very quickly with it. i have been diagnosed for years and feel i am one of the lucky ones. i have had people whojoined feel i am one of the lucky ones. i have had people who joined a support group and passed away very quickly. it is so sad they didn't even have a chance. figs it is so sad they didn't even have a chance. �* , ,, it is so sad they didn't even have a

chance. ~ , i. _ it is so sad they didn't even have a chance. �* , , it is so sad they didn't even have a chance. ~ , i. , ., it is so sad they didn't even have a chance. a w. chance. as you say, it is a cruel condition _ chance. as you say, it is a cruel condition and _ chance. as you say, it is a cruel condition and what _ chance. as you say, it is a cruel condition and what it _ chance. as you say, it is a cruel condition and what it takes - chance. as you say, it is a cruel| condition and what it takes from people and take so quickly from them and then the frustration they have trying to communicate their feelings to those who love them and care for them. thank you for talking to us about it and for the work you are doing in trying to raise money and campaigning. let's hope this 50 million can be put to good use. absolutely, thank you. coming up in a moment on bbc news, we have the sport. one of the most iconic stars, siya kolisi made history. for so long a symbol of white minority rule, the triumph of a diverse springbok side is a potent symbol of hope, progress

and pride in the rainbow nation. the win capped a remarkable fairy tale for a man brought up amid poverty and violence in a township and his spirit and talent saw him rise to become one of the most inspirational figures in sport. now in a new autobiography, kolisi has revealed more about his life and agreed to speak to me from his home in south africa about what he wants to achieve now. this is hisjourney. i believe it is notjust my story, it is the story of many south africans. a lot of them will never be able to tell their stories and i believe i had to tell mine. i would love for them to come in and see the things that people complain about and the opportunities they get. i am hoping this will get more people to step out of their environment so they can

think, notjust for me, i think for the community. yes, i want to look after my immediate family, but what i doing for the next kid living in the same environment i did. how can i make sure his tomorrow is much better than mine was? he i make sure his tomorrow is much better than mine was?— i make sure his tomorrow is much better than mine was? he write about our floors better than mine was? he write about your floors and _ better than mine was? he write about your floors and the _ better than mine was? he write about your floors and the journey _ better than mine was? he write about your floors and the journey to - your floors and the journey to becoming a better man, a better husband, a betterfather. you talk about your battle with alcohol and it may surprise many people around the world, you probably see you, like many other superstars in sport, as a flawless, perfect figure. why was it important to be so open and honest about the challenges you have overcome? . , .. honest about the challenges you have overcome? . , . overcome? that is the exact reason. some look at — overcome? that is the exact reason. some look at me _ overcome? that is the exact reason. some look at me and _

overcome? that is the exact reason. some look at me and especially - overcome? that is the exact reason. some look at me and especially on l some look at me and especially on social media, you don't post the troubles you have, you only show the good times. i call it the highlight reel on social media. i also have a responsibility, notjust to young people, but everyone, people my age who are struggling with stuff. people think, how can i get there if i am struggling. i want people to know i am fighting these battles, what i have to due to be strong. it is ok for you to go and get help when you need help. i have got good people around me to keep me accountable. rather than it killing you, help yourself before it gets too late. people realise it is too late for them to get help and i want to talk about that, i want people to know that i am a sinner who is

trying to be better every single day. i will never be perfect, but i am still enough as i am. figs day. i will never be perfect, but i am still enough as i am.- day. i will never be perfect, but i am still enough as i am. as well as mental health, _ am still enough as i am. as well as mental health, you _ am still enough as i am. as well as mental health, you have _ am still enough as i am. as well as mental health, you have spoken i am still enough as i am. as well as . mental health, you have spoken about gender based violence, what is the origin of that? to what extent did you experience that as a boy growing up. fist you experience that as a boy growing u -. �* .. you experience that as a boy growing u n . �* ., ., you experience that as a boy growing u n i �* ., ., up. at home, right next to me while i am up. at home, right next to me while i am sleeping. _ up. at home, right next to me while i am sleeping. i— up. at home, right next to me while i am sleeping, i wake _ up. at home, right next to me while i am sleeping, i wake up— up. at home, right next to me while i am sleeping, i wake up and - up. at home, right next to me while i am sleeping, i wake up and hear. i am sleeping, i wake up and hear the screams of my mum or my aunt. no one doing anything about it. people were like, it is none of their business. you see so much, you think it is normal. go to school and they don't teach about that. what you are seeing is not right, even though you seeing is not right, even though you see it every day it is not right to teach people like that. men are not asking the government to change, it

is always women. but it is actually a man's problem. there are times when i could have said, stop it, but i didn't. i have acknowledge that and now i want to make it right. i couldn't make a difference for my mum or my aunt, but now i have a voice and i have to be strong telling this story. i want to encourage men to speak up. some men don't know what to say. there is no such thing as a stupid question. just standing there and say, i am with her. they keep saying, let's teach young boys, but let's teach men, too. if men become right, the young boys will see the example and they know this is the way to behave.

for those who are yet to freeze rise, how difficult was your childhood when it came to poverty and hunger?— childhood when it came to poverty and hunger? being hungry, it goes ast bein: and hunger? being hungry, it goes past being hungry _ and hunger? being hungry, it goes past being hungry when _ and hunger? being hungry, it goes past being hungry when it - and hunger? being hungry, it goes past being hungry when it is - and hunger? being hungry, it goes| past being hungry when it is painful in your stomach. my intestines, i could feel them twisting in the middle of the night and i would scream to my grandmother and she would get me some water and that would get me some water and that would settle everything down. it was so painful, i was sitting with my friends who grew up with me and i was talking about this. i knew i didn't have to explain myself, they knew exactly what i was talking about. people in my community, they might be poor financially, about. people in my community, they might be poorfinancially, but about. people in my community, they might be poor financially, but we are happy people, new zealand people want to work hard for the things we can get. when i go to drop the

parcels, they don't like that, they want to work for what they have. i know how strong the community is and thatis know how strong the community is and that is what taught me never to complain and use what i had around me. even though things were broken, i still want to training. and then the opportunity was open because i was ready and was training. if somebody tells me i cannot do it, i keep on going until i do it. that is the life i had to leave. i am trying to teach the people to live in a mentality that they can be whatever they want to be. even though the situation around them is hopeless. you mentioned abuse and earlier use mentioned social media and one of the big challenges we face in the uk with regarding some of our black sports stars is online racial abuse

over instagram or social media generally. is that something you have experience? how concerned are you about the effects of that and the role these big tech giants have in it? it the role these big tech giants have in it? , ., , ., , the role these big tech giants have init? , ., , in it? it is horrible. people call me old, in it? it is horrible. people call me old. all— in it? it is horrible. people call me old, all kind _ in it? it is horrible. people call me old, all kind of— in it? it is horrible. people call me old, all kind of things. - me old, all kind of things. sometimes i wonder if they think we don't have feelings all this stuff doesn't matter. every now and then you read it. i don't even read the good parts, which is sad because that one person can take something good. you shouldn't be getting that kind of hate like that. everyone is allowed that opinion, but they can keep it to themselves, they don't have to write it there. people should stand up a bit more. we work hard every day, we are under pressure and we have to perform. we go out there and we give it everything we can. you are not always going to win everything, you

are not always going to perform as well as you usually do. when you have been called because of your skin colour and i saw it when england played in the soccer, i knew that was going to happen. that is the sad part. people are not surprised any more. we should protect our kids from social media, we should protect them, cut people off. they shouldn't be allowed on those kind of things because we're just our best. what about them when they do a horrible job in their work. no one gets to say horrible stuff like that to them. me and my wife, the stuff that they are calling me, a waste of spurn, she is wasting a good gene by marrying me. that stuff hurts and she took it very hard. i try and ignore it. it is horrible and that stuff should be addressed. people say, you must take

the good and the bad, i am like, no. you have mentioned your admiration for lewis hamilton, naomi osaka and now we have the likes of marcus rashford talking about child food poverty and raheem sterling about racism. you are very much at the centre of a new era it seems about athletes and actors is. athletes using their profile to change society. how important do you think that superstar athletes like yourself and those others i haven't mentioned do have opinions and use their profile to try and improve society because there are some who say, stick to sport, don't get involved in society or politics, just focus on your main job? i involved in society or politics, just focus on your main job? just focus on your main “ob? i think that is selfish. *

just focus on your main “ob? i think that is selfish. "h just focus on your main “ob? i think that is selfish. if you _ just focus on your main job? i think that is selfish. if you stop - that is selfish. if you stop playing, then you have to face all the stuff and you have the platform to use your voice and the thing is, you don't have to speak up about everything. you can't speak about something that matters to you. i believe there is a soldier for each fight and we are battling to make sure this world is a better place and we are fighting for a lot of people who cannot fight for themselves. the thing is this, if i am fighting for this, we are not fighting against each other, we are both trying to make the world better so if i fight my fight and i succeed, when i had finished i can come and join you and i can acknowledge what you are doing by supporting you. we have the platform, people listen. we can influence so many people as sportsmen. politicians don't want,

people don't listen to politicians, but they