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jethro

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@laurie
i could accept these things if there's no hope in tomorrow. kind of treatment emerged. i have very vivid dreams. dream of running, walking, living, playing with my kids... new tires on my wheelchair wont make me happy. i dont care about myself. two kids, 8yo and 1yo need me. i must fight for them. have no weapon, but it exists. i just sent an e-mail to israel and some people from brainstorm in usa.
there are pals round a world, not just in usa and canada.
regards,
j
 

oya99

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@igelb thanks for clarifying...
i do not meet criteria/i'm not eligible, i'm not us citizen and i am not fast progression. that is all. i sold my real estate and i have money. asked bstorm if there's posibility to apply nurown anywhere, i'll come and i'll pay. i don't expect to be compassionate patient. procedure/drug is here, patient is here, same as money, meets all criteria except us citizenship and fast progression.
can help me anybody with advice? what should i do with money? i sold real estate to try to heal myself. to buy a gun? jesus, what a pat position...
There is more places for accessing a trial for NurOwn than you realize.
Please see the article link below, NurOwn is not only in trials phase in US but also in Canada, and very soon in 60 different countries.
 

KimT

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Jethro,

I was too old for the trial (I'm 62) but I can relate to your post. I would have jumped at the opportunity to be in the trial and I'm hoping I'll be able to get access to the treatment if Phase 3 works out the way I think it will.

Keep e-mailing, reading, asking. I understand. I feel the same way.
 

lgelb

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Certainly, anyone interested anywhere in the world who is eligible for the NurOwn trial may wish to consider it. My point was, there is a placebo arm, and even in the treatment arm, it is not a cure. So a multi-pronged approach to treatment only makes sense.
 

LOYAL130418

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@jethro

Same like you, I have two boys and I must live for them.
With the new law "right-to-try" I believe there should be a chance for non-US citizen to access NurOwn as well as many other possible drugs in phase 1,2,3.
I think it will be great if ALS community could suggest good drugs/therapies and how to access

Rgds.
 

jethro

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@laurie,
cure/drug/pill for als doesnt exist, and can not be invented, that is a fact that everybody knows who has advanced knowledge of biochemistry, neurology... medicine. fairytales about "collect money" for investiations are basicaly moral, but in wrong direction. drug/pill against ALS is just like cannon which kills all mosquitos.
BUT
heal DOES exist. i'm not sure if i am clear enough, but i dont want to offend anybody, and don't want to hurt/erase hope of pals. unlike all simple expectations ("to find a cure"), i am sure that "drug" is inside us, same as cause. i dont want to philosophize. solution is not in pubmed, case studies, classic medicine pharmacology... i think that als is a result of metabolism disturbance, oxidative stress or something simmilar. so balancing organism is a cure!
heal is stem cells. problem is that nobody knows how long cycle can/should/will be and what additionally applying stem cells bring.stronglly agree eith your state: " So a multi-pronged approach to treatment only makes sense."
i dont want to publish personal details, just want to say that i'm in contact with some people whose spouses are on III trial.

cohorts differentiate after first (of three) transplants!!!! no further explanation required.

i have questions, but not for this subforum. i had emng today after 8 months...

@loyal where are you from?
 

jethro

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@oya99
yes, their plan few years ago was 60 countries. bstorm is in trouble to enroll 200 patients with inclusion criteria in usa and canada. forget about "60 countries". they told me to bother bstorm in israel.
i will!
 

jethro

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pals in III pase received 2'nd dose. any info?
 

oya99

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CALS
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03/2018
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US
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Apparently the CEO of Brainstorm (Nurown) was in the White House when Trump gave a speech and mentioned a PALS and said that he should not have to go to a Israel to get NurOwn treatment that it should be available in the US when signing the bill into law.
Brainstorm’s CEO is slated to give a press conference on Right to Try later this week and will address the company’s policy on this issue.
The problem remains finding hospitals or doctors willing to administer such a treatment under Right to Try when the treatment is not yet FDA approved. Even if Pharmaceuticals are willing to provide the treatment the liability for doctors and hospitals remains very large for them to accept to provide such therapies before FDA approvals.
 

jethro

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PALS
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@oya99
problem is that not just usa or canada citizens have als. i intended to spend money in usa just to have 50% chance to try nurown. righ to try gives me nothing.
i'm not eligible 'cause i'm from EU. i fulfill all other requirements.
hence, ill try in israel.
 

oya99

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CALS
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03/2018
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@jethro
I do not know the legal ramifications for Right to Try; but I do not see a patient being required to be US citizen.
It is very new and not tested, but my "guess' is nationality of the patient is not going to be an issue.
However, clinical trials are different, the pharmaceutical company can design to exclude non-US citizens, certain age groups, or for that matter any group of people they want to exclude.
In any case, if you are able to start the treatment by going to Israel and that is what you prefer to do, I believe you should fully explore that option. At the same time I suggest that you also keep an eye on what may be possible in other parts of the world including US and collect as much information as you can.
Right to Try is so very new; I do not think there is anyone who is capable of telling any patient what it will or won't do for them.
We are all very hopeful that it will make any new treatment option available to our PALS sooner than later.
 

jethro

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@oya99
i tried to enroll and overtake all duties and responsibilities, but i've been told by competent persons that i am NOT ELIGIBLE to apply, cause i am not us or canadian citizen. then i tried to enroll in israel and i've been told THAT THERE ARE NO TRIALS IN ISRAEL (?). people from brainstorm told me that. they also stated that there's possibility of "Hospital Exemption in Israel which has to be approved through the ministry of health . The Hospital Exemption would be compassionate use for a fee. Since, it has not been approved we do not have any details or a timeline to share. "
no trials in the whole world except in usa. brainstorm wanted to act via CRO (announced in july 2017), but it stopped for some reasons.
als is riding, and it will take my last joule of energy until fda approval. it is very possibly that at the time of putting nurown on the market i wont be able to move.
nurown is not drug, it doesnt cure als (never ever will be invented drug which cures als), but i believe in it and heal is possible.
we all live in one world- 7,5 billions, and permanently app 500 000 pals in the world (only in usa 20000). some of us dont even have ID (india, china, bangladesh, etc...), some are reach, poor, educated... life deals cards allways and there's no worest card!!!! everytime it deals, you can get worse one. see no bottom. it's abyss. i hope that i am clear.
we all have our different stories, but we are all sentenced in the same way. some of us accept that or dont have energy to fight but they have conditions, some of us have energy, money, but conditions laid down in law dont allow them to fight.
it's a life, god's way, or highway.
i repeat: i strongly believe in nurown. time will tell. i think that i will not hear it. this time i am late. again. but this time i will pay being late, together with my children, my parents who passed away and their living wish.
sorry, english is not my native language...
 
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oya99

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CALS
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03/2018
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US
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@jethro
You are correct, there are no trials in Israel.
But this is because they are in treatment phase in Israel; so the trial period is behind them.
Today Brainstorm's CEO had a 1.5 hour conference call which I listened to and he confirmed that NurOwn is in treatment phase in Israel.
He also said that the company has not made a decision about Right to Try and will be doing so in the next few weeks.
Just to clarify: Right to Try is ultimately a completely voluntary legislation. So there is no compulsion to provide or accept treatment on either end (pharma and patient ).
 

Tedstehr

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PALS
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CA
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BC
Jethro,

When I first heard about Edaravone, I felt I had been thrown a life preserver. One woman in Eastern Canada actually had improvements after a few infusions. I moved heaven and earth and paid a Russian nurse to do the infusions. But although it is probably slowing down my progression, I don’t know by how much and for how long. But I had built it up in my mind to be the same as a cure.

It could well be Nurown is the closest thing to a cure out there. Over time, treatments could have dramatic results and people could regain function and live as people living with ALS rather than dying from ALS. But that is not clear yet. Please be cautious! ”This is the cure and I need it now regardless of cost” may cause your family more problems than you already have now. If it is a cure, I am sure it will spread like wildfire.

Be careful friend.

Ted
 
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