This beautiful young woman's plea is urgent and compelling. She has articulated the essentials of what is absolutely needed, NOW, to give everyone afflicted by ALS a fighting chance. Amanda Stevens has become an informed, knowledgeable and important advocate not only for her beloved husband but for everyone with ALS who is being denied the opportunity for a better life by faceless bureaucracies and unjust protocols. Let's take the time to contact anyone and everyone we think might be able to help make NurOwn available immediately. Eric and Amanda and their families are not giving up; there's no excuse for the rest of us to do so either. Here's to Life with Health and Hope!
I saw this on Ellen. That is what brought me here. God bless the Sevens Family and friends! Oh my God, please help these people. This broke my heart and I am in tears!
Richard Hutchison i saw this on Ellen too and wanted to know more about it so i came here. I have never heard of ALS.. going to keep researching it. May God help this man with ALS .. he will be in my prayers.
I applaud Amanda and Eric for doing all they can to bring attention to this fight! All pALS (person with ALS) deserve every chance to access this very promising treatment NOW!
Bless you and your husband. I will do my best to spread the word and advocate for a cure. I can’t imagine what your going through. I pray that you have peace, comfort, and love through the terrible pain you must both be experiencing. You are so lucky to have each other.
I’ve been following Amanda and Eric since they were on Ellen. I only wish I was in America or I would certainly reach out to senators. I’m praying that your voice is heard and change comes from this. I admire you both. Love never stops. Praying for you in Toronto Canada.
My Grandpa has been diagnosed with ALS since 2012 and it’s been the most difficult journey for my entire family. He is on life support and has been bed ridden for 7 years straight, he has lost a tremendous amount of weight. It’s very difficult and I pray no one ever goes through this and I hope there’s a cure soon
I agree with everything this lady has said. Her story is very compelling, and I appreciate her and her husband’s advocacy for the ALS community. I lost my mother to ALS over 7 years ago. We actually tried a stem cell treatment that was not FDA approved but was showing some promise and was being administered by a physician hear in the U.S. It ended up not doing much for my mother, but it gave us hope, and at the time, that was priceless. I have been following Nurown and Brainstorm for years now, and this treatment seems like the real deal. This may offer the greatest hope that the ALS community has ever seen. I read the other day that the cost of this treatment, should one have to pay out of pocket, is close to $300,000. Now I don’t know if this is one administration or multiple, and I would also venture to say that this may end up being administered periodically with “maintenance” doses. Obviously protocols have not been nailed down at this point. Suffice it to say that this is an expensive treatment. It’s one thing to by pass the standard FDA approval process and give terminally ill patients the “right to try.” It’s a whole other thing to make this accessible to patients who are not million or billionaires. Without FDA approval, I would almost guarantee no insurances will pay anything for this. Also, knowing how many years of research and development have gone into this, I would say the company is not going to give it away. So what is the solution? What has to happen to make this fully available to ALL of the ALS community?
I can feel her pain and the powerful love she has for others. Sending all of my prayers and love to you both. You are going to change the world with your words and story❤️
Amanda and Eric you are such a beautiful and inspiring couple. I really hope you get your wish for the treatment that Eric and so many others need and the two of you can live a long and happy life together.
This is a devastating disease. Amanda tells it like it is, and why so many of us are watching our loved ones decline and die from this disease. If this treatment is held longer and longer, we will lose the loved ones we are fighting for. No one knows how despicable this disease is unless you have been on the journey of ALS, both patients and caregivers. Please help to fight ALS, there are no words strong enough to describe it.
Hi Amanda, I couldn't agree with you more. My husband has diagnosed with ALS on 12/30/19. ALS patients don't have the time to wait. How many ALS patients have to die in order for the our government or FDA to act fast. Thanks.
My heart cries out to Amanda and Steve. Thank you Ellen for such shows I didn't know anything about this disease and thank for Steve,s treatment and continuous support.
What a brave and heartbreaking plea from a young women going through the cruelest of situations. You are truly amazing, you should be very proud of what you are doing for your husband and everyone suffering from ALS.
My heart goes ye to Eric & Amanda. So young, so full of health and life and yet this ghost of disease invades one's body and one's muscles without cause or cure. Just slowly takes way all movements as the whole family watches on helplessly. A disease like rust. Rust never sleeps, neither does MND/ALS. It works and your body while you sleep. I've got the hated thing for the past 43 years. I'm badly wounded. But miraculously I've still got a life. I would love to see Eric and Amanda spend many years together and indeed with some form of cure or at least something to arrest this galloping disease. I will pray for ye both and all those in this world with this cruel disease. Because nobody else seems to have any answer. Andy McGovern, survivor - so far.
A long life is a gift. This disease is hugely cruel. Eric, I hope you are doing well. Lots of us on this side of the computer love you and yur wife and we hope for the best.
You are indeed a VERY STRONG WOMAN, you should know that you are ONE OF THE FEW TRUE HERO TO MANY. You wonder why the hug? You did because your soul recognized his. PLEASE DO, ALLLLWAYS BE YOU.
I saw your story on Ellen, it breaks my heart. I will call my Congressman and Senator, the FDA needs to get out of the way for progress for terminally ill patience.
16/8/22. Beautiful speech, i have MND (ALS) in uk, how are things today ?. Mine started in 2006 age 58 in my foot, i wasn't diagnosed until 2015 i am now 74 year old man. How is Eric today in 2022.?
Perhaps this is a case where we can lean in and make a difference? Amanda, I stand with you and Eric. I hope we all take a minute to help those with ALS- please, write your congressperson. I will now.
Is there an update with the treatment? I have ALS and my doctor has never told me about a treatment. I applaud Amanda for speaking up. How is Eric doing?
I have encountered numerous ALS patients who have tested negative for Borrelia Burgdorferi (Lyme Disease) but positive fo Relapsing Fever Borrelia. The clinical presentation - i.e. Neurodegenerative Disease - is the same for all Borrelia infections. Also I have encountered ALS patients whose initial Borrelia tests are negative but whose identical tests become positive after "provocative antibiotics". The explanation is because in the chronic Borrelia infection the spirochete becomes a cyst and is sequestered away from the immune system. All of the tests measure the antibodies in the patient's circulation - if the immune system is not challenged there is no antibody production. The provocative antibiotics are Flagyl 500mg and Zithromycin 500mg. The Flagyl opens the cyst allowing the Zithromycin to penetrate. The patient takes the provocative antibiotics (one of each) daily for 21 days pre-testing. The proper testing must include all Borrelia species.
Im heart broken, lots of prayers for all in including of of my best friend at work, Please when time permits can u forward information for my friend Andrew, hope is always a good thing, I will try my best to help my best friend Andrew, thank you Joseph form California 🙏🙏🙏
It is difficult for me to understand that terminally ill patients are granted the right to terminate their own life (btw, sth I fully advocate!!) but are denied to try a new drug, even if untested - What do they have to lose? ...
We need to contact President Trump who promised to release drugs that will help people and not wait for clinical trials. We know someone who is getting stem cells for MS. The use of stem cells gives hope to many who are effected with various diseases.
Amanda, thank you for making this important video and including our son Phil Green in your discussion about people with ALS who have participated in clinical trial for NurOwn.
I don't often cry at these, but blimey. I don't understand if they have something that can help that they don't roll it out to everyone. :( American medical assistance really baffles me.
I have just heard that this woman is pregnant.... no doctor told them that there is a strong possibility that their baby suffers from this disease in the future ? Besides, she will have double work..... taking care of husband and the baby. ..........
Same thing happens daily with cancer patients, know good an well there's a cure but we all know there's no money to be made as there is with research considering it's a 100% profit. Sad sad world we attend.
Mam please if your husband can breathe on his own, than please make him join "yoga centres specially " Pranayaams" Powerful universal breathing spiritual techniques by Indian yogis! USA has many centers of such type, please your husband needs universal life force energy called "prana", only this can make him healthy, please I beg u, bless u..... Om shaanti
This beautiful young woman's plea is urgent and compelling. She has articulated the essentials of what is absolutely needed, NOW, to give everyone afflicted by ALS a fighting chance. Amanda Stevens has become an informed, knowledgeable and important advocate not only for her beloved husband but for everyone with ALS who is being denied the opportunity for a better life by faceless bureaucracies and unjust protocols. Let's take the time to contact anyone and everyone we think might be able to help make NurOwn available immediately. Eric and Amanda and their families are not giving up; there's no excuse for the rest of us to do so either. Here's to Life with Health and Hope!
She was my second grade teacher
I saw this on Ellen. That is what brought me here. God bless the Sevens Family and friends! Oh my God, please help these people. This broke my heart and I am in tears!
Me too.
Richard Hutchison i saw this on Ellen too and wanted to know more about it so i came here. I have never heard of ALS.. going to keep researching it. May God help this man with ALS .. he will be in my prayers.
Thank you for fighting for our families with Als. My poor niece was diagnosed at 19. We would do anything for this treatment!
That's horrible my heart goes out to her..may I ask how is she doing now and what was her first symptoms
Amanda, many thanks from people around the world! You are the real fighter for people who's having ALS right now.
Best 19 minutes I've spent this week.
I applaud Amanda and Eric for doing all they can to bring attention to this fight! All pALS (person with ALS) deserve every chance to access this very promising treatment NOW!
Bless you and your husband. I will do my best to spread the word and advocate for a cure. I can’t imagine what your going through. I pray that you have peace, comfort, and love through the terrible pain you must both be experiencing. You are so lucky to have each other.
I’ve been following Amanda and Eric since they were on Ellen. I only wish I was in America or I would certainly reach out to senators. I’m praying that your voice is heard and change comes from this. I admire you both. Love never stops. Praying for you in Toronto Canada.
My Grandpa has been diagnosed with ALS since 2012 and it’s been the most difficult journey for my entire family. He is on life support and has been bed ridden for 7 years straight, he has lost a tremendous amount of weight. It’s very difficult and I pray no one ever goes through this and I hope there’s a cure soon
I agree with everything this lady has said. Her story is very compelling, and I appreciate her and her husband’s advocacy for the ALS community. I lost my mother to ALS over 7 years ago. We actually tried a stem cell treatment that was not FDA approved but was showing some promise and was being administered by a physician hear in the U.S. It ended up not doing much for my mother, but it gave us hope, and at the time, that was priceless. I have been following Nurown and Brainstorm for years now, and this treatment seems like the real deal. This may offer the greatest hope that the ALS community has ever seen. I read the other day that the cost of this treatment, should one have to pay out of pocket, is close to $300,000. Now I don’t know if this is one administration or multiple, and I would also venture to say that this may end up being administered periodically with “maintenance” doses. Obviously protocols have not been nailed down at this point. Suffice it to say that this is an expensive treatment. It’s one thing to by pass the standard FDA approval process and give terminally ill patients the “right to try.” It’s a whole other thing to make this accessible to patients who are not million or billionaires. Without FDA approval, I would almost guarantee no insurances will pay anything for this. Also, knowing how many years of research and development have gone into this, I would say the company is not going to give it away. So what is the solution? What has to happen to make this fully available to ALL of the ALS community?
My mom has ALS, thank you for your work, and spreading awareness
He and others in the same situation will win this battle. We pray, we believe! Brave speech!
Sending you and Eric so much love Amanda. Thank you for giving a voice to ALS patients. FIGHT FOR HOPE
I can feel her pain and the powerful love she has for others. Sending all of my prayers and love to you both. You are going to change the world with your words and story❤️
Incredibly spoken - excellent job!
Beautifully stated. I am an ALS Warrior and I want a chance to fight this battle. God bless all of us.
God bless you, I hope Amanda & Eric get through to the right people to make NurOwn available.. Praying for you.. -a ALS widow. HUGS
Amanda and Eric you are such a beautiful and inspiring couple. I really hope you get your wish for the treatment that Eric and so many others need and the two of you can live a long and happy life together.
This is a devastating disease. Amanda tells it like it is, and why so many of us are watching our loved ones decline and die from this disease. If this treatment is held longer and longer, we will lose the loved ones we are fighting for. No one knows how despicable this disease is unless you have been on the journey of ALS, both patients and caregivers. Please help to fight ALS, there are no words strong enough to describe it.
Hi Amanda,
I couldn't agree with you more. My husband has diagnosed with ALS on 12/30/19. ALS patients don't have the time to wait. How many ALS patients have to die in order for the our government or FDA to act fast. Thanks.
Amanda, you’re so inspiring. I’ll do everything I can to share your story. Keep fighting!!!
That presentation was a grand slam!
Great job Amanda!
My prayers are for you and the rest of the ALS NATION.
Amazing courage and strength. We are with you Amanda & Eric. Keep on fighting!!!
My heart cries out to Amanda and Steve. Thank you Ellen for such shows I didn't know anything about this disease and thank for Steve,s treatment and continuous support.
What a brave and heartbreaking plea from a young women going through the cruelest of situations. You are truly amazing, you should be very proud of what you are doing for your husband and everyone suffering from ALS.
My heart goes ye to Eric & Amanda. So young, so full of health and life and yet this ghost of disease invades one's body and one's muscles without cause or cure. Just slowly takes way all movements as the whole family watches on helplessly. A disease like rust. Rust never sleeps, neither does MND/ALS. It works and your body while you sleep. I've got the hated thing for the past 43 years. I'm badly wounded. But miraculously I've still got a life. I would love to see Eric and Amanda spend many years together and indeed with some form of cure or at least something to arrest this galloping disease. I will pray for ye both and all those in this world with this cruel disease. Because nobody else seems to have any answer. Andy McGovern, survivor - so far.
They are a beautiful couple - well spoken Amanda - sending HOPE your way
A long life is a gift. This disease is hugely cruel. Eric, I hope you are doing well. Lots of us on this side of the computer love you and yur wife and we hope for the best.
You are indeed a VERY STRONG WOMAN, you should know that you are ONE OF THE FEW TRUE HERO TO MANY. You wonder why the hug? You did because your soul recognized his. PLEASE DO, ALLLLWAYS BE YOU.
That was powerful and moving. This couple is amazing. We need to get the fda to release the medication for ALS every patients use!!!!!@
Awesome job Amanda
beautiful job Amanda you are AMAZING!
I am praying and will continue to pray for you and your family! Jesus Christ is Lord and he absolutely can heal anything.
I saw your story on Ellen, it breaks my heart. I will call my Congressman and Senator, the FDA needs to get out of the way for progress for terminally ill patience.
16/8/22. Beautiful speech, i have MND (ALS) in uk, how are things today ?. Mine started in 2006 age 58 in my foot, i wasn't diagnosed until 2015 i am now 74 year old man. How is Eric today in 2022.?
I wonder what they The FDA would do if any of them or one of their loved ones would get ALS??????I bet the progress will be super quick...
You can bet they would get the drug approved,
Perhaps this is a case where we can lean in and make a difference? Amanda, I stand with you and Eric. I hope we all take a minute to help those with ALS- please, write your congressperson. I will now.
Incredible talk .
Great job Amanda!!
Excellent job!!! I hope the policy changes soon. These people, their families need help now.
Thank you!
Is there an update with the treatment? I have ALS and my doctor has never told me about a treatment. I applaud Amanda for speaking up. How is Eric doing?
Hearing these stories are so heartbreaking and frustrating. I dont even think this disease is that rare for it to be this ignored this badly.
Keep fighting guys
Please god heal these people I beg of you my mother of son has this
Thanks, hyper-capitalist America. Please place suffering people ahead of unbridled profits, please. And bless you, Amanda and Eric.
While I’m praying for his health I hope the cure can be released and provided to save lives
Incredible people
I have encountered numerous ALS patients who have tested negative for Borrelia Burgdorferi (Lyme Disease) but positive fo Relapsing Fever Borrelia.
The clinical presentation - i.e. Neurodegenerative Disease - is the same for all Borrelia infections.
Also I have encountered ALS patients whose initial Borrelia tests are negative but whose identical tests become positive after "provocative antibiotics".
The explanation is because in the chronic Borrelia infection the spirochete becomes a cyst and is sequestered away from the immune system.
All of the tests measure the antibodies in the patient's circulation - if the immune system is not challenged there is no antibody production.
The provocative antibiotics are Flagyl 500mg and Zithromycin 500mg.
The Flagyl opens the cyst allowing the Zithromycin to penetrate.
The patient takes the provocative antibiotics (one of each) daily for 21 days pre-testing.
The proper testing must include all Borrelia species.
Any updates, last I heard was that he received the first phase. How is he doing?
They need to help them now! Let them make this choice for the trial! It's their life! What do they got to loose by trying?
Please look into the Deanna Protocol. The history is uplifting, and there is hope there.
Im heart broken, lots of prayers for all in including of of my best friend at work, Please when time permits can u forward information for my friend Andrew, hope is always a good thing, I will try my best to help my best friend Andrew, thank you Joseph form California 🙏🙏🙏
Approve NurOwn NOW
Proper testing is CRITICAL !!!!
Well done
Amazing
It is difficult for me to understand that terminally ill patients are granted the right to terminate their own life (btw, sth I fully advocate!!) but are denied to try a new drug, even if untested - What do they have to lose? ...
Powerful
Does anyone know how Eric is doing?
We need to contact President Trump who promised to release drugs that will help people and not wait for clinical trials. We know someone who is getting stem cells for MS. The use of stem cells gives hope to many who are effected with various diseases.
Amanda, thank you for making this important video and including our son Phil Green in your discussion about people with ALS who have participated in clinical trial for NurOwn.
Good Job Amanda
I don't often cry at these, but blimey. I don't understand if they have something that can help that they don't roll it out to everyone. :( American medical assistance really baffles me.
What about the new law “the right to try”.....? It’s suppose to allow someone like your husband have the right to try the treatment.
Ellen brought me here
She was my second grade teacher
Please God help us
God Bless...
My daughter was diagnosed and passed at the age of 25. 💔
💞💞💞💞🤟🏽🤟🏽🤟🏽🤟🏽
I dont know how you feel about trump but if somebody got a hold of him he would push for it
He couldn't care less.
tRump only cares if pertains to him directly.
I can't even Google Nerone😭
NurOwn
It is not fair for them to play with peoples life over some trial that has proved to be effective . praying 🙏
I have just heard that this woman is pregnant.... no doctor told them that there is a strong possibility that their baby suffers from this disease in the future ?
Besides, she will have double work..... taking care of husband
and the baby.
..........
Same thing happens daily with cancer patients, know good an well there's a cure but we all know there's no money to be made as there is with research considering it's a 100% profit. Sad sad world we attend.
🙏🙏🙏🌹🌹🌹🌹💧💧💧
Mam please if your husband can breathe on his own, than please make him join "yoga centres specially " Pranayaams" Powerful universal breathing spiritual techniques by Indian yogis! USA has many centers of such type, please your husband needs universal life force energy called "prana", only this can make him healthy, please I beg u, bless u..... Om shaanti
FDA release nurown now stop people dying it's just not right!
🌹🌹🌹🙏🙏🙏💧💧💧