Worst disease is this one. No percentage of survival. Even stage 4 pancreatic cancer has a 1% chance. It’s incredibly sad this one. Lots of hope for diabetics. 😊
Justin my prayers are with you. My brother and my Aunt have ALS. I didn’t want to be tested I felt like this family that I always loved and cherished is gene poor. I will push on and pray.
Thank you for posting this amazing story, hope everything ends well with justin and his family, his spirit to strive and his patience was so incredible. Thank you
Justin you are a true hero!! Your strength and continued research will end up saving many people. Many prayers n hugs for you and your precious family 🙏🙏🥇❤️🇨🇦
There are several types of motor neuron disease. *Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease* is the most common type, affecting muscles of the arms, legs, mouth, and respiratory system. Mean survival time is 3 to 5 years, but some people live 10 years or more beyond diagnosis with supportive care. *Progressive Bulbar Palsy (PBP)* involves the brain stem. People with ALS often have PBP too. The condition causes frequent choking spells, difficulty speaking, eating, and swallowing. *Progressive Muscular Atrophy (PMA)* slowly but progressively causes muscle wasting, especially in the arms, legs, and mouth. It may be a variation of ALS. *Primary Lateral Sclerosis (PLS)* is a rare formof MND that advances more slowly than ALS. It is not fatal, but it can affect the quality of life. In children, it is known as juvenile primary lateral sclerosis. *Spinal Muscular Atrophy (SMA)* is an inherited MND that affects children. There are three types, all caused by an abnormal gene known as SMA1. It tends to affect the trunk, legs, and arms. Long-term outlook varies according to type. The different types of MND share similar symptoms, but they progress at different speeds and vary in severity.
I watched a lot of these ALS stories. And my heart goes out to these poor ppl, who doesn’t deserve this horrific disease. This story is a inspiration to some, but also its such a tragedy, that this monster of disease runs in this young mans family. Just think this young man daughters may carry this gene also.. Are maybe his nieces, or nephews as well . Honestly I would never have children, if I was born into this family. I would literally adopt. I pray they find a cure for this horrible disease, because god knows we need one. Praying for Justin & his family .
@Sunny bob Quackers the original comment already mentioned adoption as an option, which is why I said IVF was also an option, as in it was an option additional to first option mentioned (adoption). I apologise if it looked like I was overlooking or dismissing adoption vs IVF. I'm actually adopted myself, along with my twin sister and many of my siblings. Currently, we're preparing for my baby ( well, not so baby anymore, she's so big now!!) Foster sister to be adopted, only 2 weeks to go until she's moving in with her forever family ! I got a little off topic there sorry haha but yes, ivf and adoption and definitely both great options! I just mentioned one, because the other already had been :)
What an amazing man! I wish he didn't have it, maybe someone else, but not him because he has so much to offer, he could even find a cure or treatment. Now, that monster of the disease will slow him down.
Maybe someone else??? So another family? How about no one suffer from this. Because it’s a family disease. Not just the one person suffering from the disease.
@@sherylduncan9568 The disease itself is not hereditary, the gene defect that causes it is. You can get ALS a number of ways, most of which are not hereditary.
@sherylduncan9568 No. No. No. That's not what I meant. I thought people might take it the wrong way. I meant like Kim Jon Un. Or someone who killed their family for inheritance. Or Putin. Or Trump.
how could anyone willingly have bio children knowing full well theyres a strong chance they will pass such a horrible fate onto theyre children? i have mutiple heriditary pronlems and im ANRGY with my parents for decicing to have me, im genuianyl FURIOUS. how tf can anyone willing do that especiall with that knowlege and with it being such a tragic fate.
Justin had his children when he did not know ALS runs in his family. I understand your anger, but i think life is worth living, even if short. Enjoy every moment of it. Im glad my parents decided to have a third child. My mum passed away with ALS. I changed the way i live, im still doing research on what caused it and how to prevent it. Get happy, because anger and negative feelings move you closer to disease. God bless
@@felyf71 ya life is worth living so you should adopt. He also knew about the ALS from early childhood before he had kids, half his entire family died from it left and right when he was growing up so you can’t excuse this with ignorance. And you saying god bless to me not wanting kids to die of an illness is insane seek god not the church
@@cacamoto5395 They didn't die while he was growing up, his uncle was the first to get the diagnosis in the 90s and died in '96, Justin was born in the 70s. He was 26~ when his first relative died from it, i think it was his mother that was the next person to get diagnosed when she was in her 70s so well after the uncle had passed away. Also, as someone with hereditary ALS (familial ALS) you do not know it is hereditary at the first person, second person it gets suspicious, third person you get tested. The gene defects that cause familial ALS are also relatively newly discovered. They didn't know it was hereditary until after he had children. MND is not common, and it's even more rare for it to be hereditary. In my family none of the people that have (or had) the gene defect knew before they had children. My grandmother died in '01 and my aunt in '22, like we didn't know until my aunt was diagnosed in 2021, at that point all my grandmothers children had children of their own, and they had children. Because of the 20 year gap between my grandmother and aunt being diagnosed, 3 generations were affected without knowing. That's just how this works because the disease comes along in adulthood, not childhood (there are childhood forms of MND, they tend to progress alot slower and are not ALS nor hereditary). It is a tragedy, and i also have another even more rare hereditary genetic defect. Does it suck? yes of course it does, but dude life sucks make the best of it. Life is beautiful and tragic, and for some of us it's too short to fill it with anger at the fact that it's tragic. I totally understand you, don't get me wrong, i've spend too much of my life being angry and resentful, and it has given me nothing but pain. It just adds to the tragedy. So i hope you find within yourself, where you can find happiness instead of anger. At any rate, when it comes to familial ALS it doesn't make sense to be angry at your parents because chances are VERY likely they had no idea.
I have studied Als lately. I have a neurodegenerative disease which behaves as Als. Is any recent study on cd25 and Fox3p (autoimmunity), glutamate, acetylcholine, vitamin d3, zinc ?
I had mnd diagnosed a year ago. Could not believe it will be progressing so fast. I is very difficult to live with it, as all body is getting weaker every day. How long it took to get you in that stage from diagnosis?
Has to be in our foods. Preservatives or something mysterious, or in the water. Because many families eat very similar. So I disagree that it’s hereditary.
You "disagree" that it's hereditary? This isn't a matter of opinion. You don't get to sit there and say half my family fucking died slowly because of something they ate. You are a horrible person, good god. Be SEVERELY ashamed.
I appreciate you Dr. Ofenmu RUclips channel. You have always help me with any health issues, the herpes virus was something the world thought has no cure but I’m happy my result came out negative. Keep up the good work.
If your partner has it, but it's very rare. MND is already fairly rare in the realm of genetic disorders. However, if you have MND it is more likely to come about as a random defect than hereditary, only about 10% of people with MND conditions have a hereditary form. So you can just get it randomly.
He's still alive and working as a professor! He's such an inspiration to be. He's who encouraged me to keep going with university, even though I am on a ventilator and neary all my muscles have died, plus many complications that made studying a big challenge
Holy what a disco accident sorry jen z big Al broke the internet. its gonna take decades to fix all my speling misstakes golf town its actually golfe towne tech trix dont print the url Art some dots go bib it t boop ite boo.... albreat into albreta because im albreat Einstine! i trick p rint tric rico peco chap no more redactions
There is hope for humanity with people like Justin.
Wow... he’s one special man... his courage, love, intelligence, and love for family is admirable.
What about using olive oil
@@cynthiamurray8055olive oil to cook an egg? Sure. To cure ALS? No
Oh yeah where is the cure Then it’s all a fing scam
So sad. I am so sorry for all the losses. My friend died of this horrific disease. Much prayers to you.
I have so much respect for this guy, words cannot describe it.
Ill never complain about diabetes running in my family again
Worst disease is this one. No percentage of survival. Even stage 4 pancreatic cancer has a 1% chance. It’s incredibly sad this one.
Lots of hope for diabetics. 😊
What a legend of a man. he’s a gentleman with a great family and friends ❤❤❤❤
Justin my prayers are with you. My brother and my Aunt have ALS. I didn’t want to be tested I felt like this family that I always loved and cherished is gene poor. I will push on and pray.
Thank you for posting this amazing story, hope everything ends well with justin and his family, his spirit to strive and his patience was so incredible. Thank you
Unbelievable story. Justin is a true hero.
Justin you are a true hero!! Your strength and continued research will end up saving many people. Many prayers n hugs for you and your precious family 🙏🙏🥇❤️🇨🇦
This is so sad what an incredible man.
Wow! What a marvelous story. Thank you!
if 1/10 th of people had half his willpower we would live in a completely diffrent world
When I first watched this doc he was alive and now just like that he has passed. RIP JY.
There are several types of motor neuron disease.
*Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease* is the most common type, affecting muscles of the arms, legs, mouth, and respiratory system. Mean survival time is 3 to 5 years, but some people live 10 years or more beyond diagnosis with supportive care.
*Progressive Bulbar Palsy (PBP)* involves the brain stem. People with ALS often have PBP too. The condition causes frequent choking spells, difficulty speaking, eating, and swallowing.
*Progressive Muscular Atrophy (PMA)* slowly but progressively causes muscle wasting, especially in the arms, legs, and mouth. It may be a variation of ALS.
*Primary Lateral Sclerosis (PLS)* is a rare formof MND that advances more slowly than ALS. It is not fatal, but it can affect the quality of life. In children, it is known as juvenile primary lateral sclerosis.
*Spinal Muscular Atrophy (SMA)* is an inherited MND that affects children. There are three types, all caused by an abnormal gene known as SMA1. It tends to affect the trunk, legs, and arms. Long-term outlook varies according to type.
The different types of MND share similar symptoms, but they progress at different speeds and vary in severity.
limalimalolo if you smart enough, you can share them also. If you not smart enough, you can just laugh in entire your life 😊
Many people dont get diagnosed for years , by the time they do its obvious to everyone
Just read that this man passed away in July 2023 at just 49 years old :( Such a horrible disease :(
Thanks for information
I watched a lot of these ALS stories. And my heart goes out to these poor ppl, who doesn’t deserve this horrific disease. This story is a inspiration to some, but also its such a tragedy, that this monster of disease runs in this young mans family. Just think this young man daughters may carry this gene also.. Are maybe his nieces, or nephews as well . Honestly I would never have children, if I was born into this family. I would literally adopt. I pray they find a cure for this horrible disease, because god knows we need one. Praying for Justin & his family .
Yes, I think I wouldn't also have children in their situation..I pray for a cure for them
IVF is an option, if someone's beliefs are okay with 'picking' an embryo without the defective gene
@Sunny bob Quackers the original comment already mentioned adoption as an option, which is why I said IVF was also an option, as in it was an option additional to first option mentioned (adoption). I apologise if it looked like I was overlooking or dismissing adoption vs IVF. I'm actually adopted myself, along with my twin sister and many of my siblings. Currently, we're preparing for my baby ( well, not so baby anymore, she's so big now!!) Foster sister to be adopted, only 2 weeks to go until she's moving in with her forever family ! I got a little off topic there sorry haha but yes, ivf and adoption and definitely both great options! I just mentioned one, because the other already had been :)
What a wonderful individual. Bless you, sir.
What an amazing man!
I wish he didn't have it, maybe someone else, but not him because he has so much to offer, he could even find a cure or treatment. Now, that monster of the disease will slow him down.
Maybe someone else??? So another family? How about no one suffer from this. Because it’s a family disease. Not just the one person suffering from the disease.
@@sherylduncan9568 The disease itself is not hereditary, the gene defect that causes it is.
You can get ALS a number of ways, most of which are not hereditary.
@sherylduncan9568 No. No. No. That's not what I meant. I thought people might take it the wrong way. I meant like Kim Jon Un. Or someone who killed their family for inheritance. Or Putin.
Or Trump.
What a wonderful man and a great family. Love ❤️. God bless.
My husband every 3 months something changed . Two and a half years then he passed .there is no cure .
God bless him and his family.
great man sir ..very much inspiratation for lot of them
What an amazing person!
how could anyone willingly have bio children knowing full well theyres a strong chance they will pass such a horrible fate onto theyre children?
i have mutiple heriditary pronlems and im ANRGY with my parents for decicing to have me, im genuianyl FURIOUS.
how tf can anyone willing do that especiall with that knowlege and with it being such a tragic fate.
Justin had his children when he did not know ALS runs in his family. I understand your anger, but i think life is worth living, even if short. Enjoy every moment of it. Im glad my parents decided to have a third child. My mum passed away with ALS. I changed the way i live, im still doing research on what caused it and how to prevent it. Get happy, because anger and negative feelings move you closer to disease. God bless
@@felyf71 ya life is worth living so you should adopt. He also knew about the ALS from early childhood before he had kids, half his entire family died from it left and right when he was growing up so you can’t excuse this with ignorance. And you saying god bless to me not wanting kids to die of an illness is insane seek god not the church
@@cacamoto5395 They didn't die while he was growing up, his uncle was the first to get the diagnosis in the 90s and died in '96, Justin was born in the 70s. He was 26~ when his first relative died from it, i think it was his mother that was the next person to get diagnosed when she was in her 70s so well after the uncle had passed away.
Also, as someone with hereditary ALS (familial ALS) you do not know it is hereditary at the first person, second person it gets suspicious, third person you get tested. The gene defects that cause familial ALS are also relatively newly discovered. They didn't know it was hereditary until after he had children. MND is not common, and it's even more rare for it to be hereditary. In my family none of the people that have (or had) the gene defect knew before they had children. My grandmother died in '01 and my aunt in '22, like we didn't know until my aunt was diagnosed in 2021, at that point all my grandmothers children had children of their own, and they had children. Because of the 20 year gap between my grandmother and aunt being diagnosed, 3 generations were affected without knowing. That's just how this works because the disease comes along in adulthood, not childhood (there are childhood forms of MND, they tend to progress alot slower and are not ALS nor hereditary).
It is a tragedy, and i also have another even more rare hereditary genetic defect. Does it suck? yes of course it does, but dude life sucks make the best of it. Life is beautiful and tragic, and for some of us it's too short to fill it with anger at the fact that it's tragic. I totally understand you, don't get me wrong, i've spend too much of my life being angry and resentful, and it has given me nothing but pain. It just adds to the tragedy. So i hope you find within yourself, where you can find happiness instead of anger.
At any rate, when it comes to familial ALS it doesn't make sense to be angry at your parents because chances are VERY likely they had no idea.
Wow it’s not fair most of the family. Damn, lost for words
No MND in my family but a ton a killer cancers. It is always something
what a amazing strong man
RIP Justin
What about children, their daughters? Thayer both still have 50% chance of having that faulty SOD1 gen responsible for familial ALS.
I have studied Als lately. I have a neurodegenerative disease which behaves as Als.
Is any recent study on cd25 and Fox3p (autoimmunity), glutamate, acetylcholine, vitamin d3, zinc ?
I had mnd diagnosed a year ago. Could not believe it will be progressing so fast. I is very difficult to live with it, as all body is getting weaker every day. How long it took to get you in that stage from diagnosis?
I am so sorry to hear that, my heart goes out to you, i can't even imagine what that must be like
Only Jesus can save anyone!
He doesn't exist. Never did.
Absolutely. I’m here 20 years later from cancer. Prayer and following Jesus works.
Sad af...rough deal on genetics!
What a terrible disease. Unfortunately now his 2 daughters face the possibility of the same.
This makes me so sad. A terrible disease
إن الله على كل شيء قدير
We are part of God.
Has to be in our foods. Preservatives or something mysterious, or in the water. Because many families eat very similar. So I disagree that it’s hereditary.
You "disagree" that it's hereditary? This isn't a matter of opinion. You don't get to sit there and say half my family fucking died slowly because of something they ate. You are a horrible person, good god. Be SEVERELY ashamed.
I agree 💯 just like cancer
What is the treatment
hero
I appreciate you Dr. Ofenmu RUclips channel. You have always help me with any health issues, the herpes virus was something the world thought has no cure but I’m happy my result came out negative. Keep up the good work.
Like Lorenzo's story
Motor neuron diseases are the worse.
What about oil olive oil.
What about processed food poisoning us. None of these diseases were here a hundred years ago.
What will olive oil do for MND?
What about Red Light Therapy?
Even if you don’t have the gene is it possible to give it to children ?
If your partner has it, but it's very rare. MND is already fairly rare in the realm of genetic disorders. However, if you have MND it is more likely to come about as a random defect than hereditary, only about 10% of people with MND conditions have a hereditary form.
So you can just get it randomly.
So Perlux Purple is the treatment of ALS. Color apparently matter. Share if you are an ALS survivor.
No survivors
Has he passed on ?
He's still alive and working as a professor! He's such an inspiration to be. He's who encouraged me to keep going with university, even though I am on a ventilator and neary all my muscles have died, plus many complications that made studying a big challenge
He passed away on July 28, 2023. 😢
😢😢😢😢@@ginamarshall7691
😢😢
I Pray that Our Lord Jesus Christ gives man the cure to this Cruel Disease.
Holy what a disco accident sorry jen z big Al broke the internet. its gonna take decades to fix all my speling misstakes golf town its actually golfe towne tech trix dont print the url Art some dots go bib it t boop ite boo.... albreat into albreta because im albreat Einstine! i trick p rint tric rico peco chap no more redactions
NO INFO THE WWWHHHOOOLLLEEE VIDEO---
This documentary is about one man’s journey with ALS. If you want a clinical breakdown of how ALS works in the brain I’m quite sure you can find one.
@@Lunchladydoyle thx 4 the 2 cents
i Already HAVE IT!!!