Tags:
Couldn't agree with you more Ofelia. And yes, I missed the entire fb nonsense that must've taken place earlier or who knows when. Personally I think anyone that wants to take on an experimental treatment I am 100% for! Nobody asked my opinion, which is fine. Yet I, among others, have been subjected to name calling and cut off. This isn't rational behavior.
Just as you, I am NOT here to fight and have many, many better uses of time. Instead I was hoping to continue dialog in order to help remedy a stupid situation. So although this issue has nothing to do with me personally, what I see bothers me because it continues to splinter an already tiny group of people who need to stay connected to benefit all our guys.
Like I said, information is useless unless it is shared. Sharing has nothing to do with name calling & 'offing others.
I agree Cheryl.
cheryl cliff said:Couldn't agree with you more Ofelia. And yes, I missed the entire fb nonsense that must've taken place earlier or who knows when. Personally I think anyone that wants to take on an experimental treatment I am 100% for! Nobody asked my opinion, which is fine. Yet I, among others, have been subjected to name calling and cut off. This isn't rational behavior.
Just as you, I am NOT here to fight and have many, many better uses of time. Instead I was hoping to continue dialog in order to help remedy a stupid situation. So although this issue has nothing to do with me personally, what I see bothers me because it continues to splinter an already tiny group of people who need to stay connected to benefit all our guys.
Like I said, information is useless unless it is shared. Sharing has nothing to do with name calling & 'offing others.
Actually, the point I wanted to make was different as I have no information about anyone crying victim and I am not interested in it. In fact, people I talked to simply said that using the machine is a personal decision hence do not see the need to explain anything to anyone.
My point is that, if we want to have a clear read on the changes observed or not, collection of data needs to be performed by a third party. My understanding from Sharon's blog is that conducting an STS clinical trial is costly hence the first step would be an observational study. This would not be the first time such a study is conducted in the DMD community. Many of us used Protandim for years, for example, based on observational data. Recently, papers have been published about benefits in other health conditions and in the mdx animal model for DMD.
Obviously, funding/planning/consulting and involving specialists/collecting and analyzing data is required even for an observational study.
In fact, people I talked to simply said that using the machine is a personal decision hence do not see the need to explain anything to anyone
Cannot agree more Keith and Cheryl.
We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change) if data is collected in a controlled maner. There are 36 families using the machine now, right? I would assume that most of them would provide information anonymously?
Now more importantly, what variables/tests need to be measured (MRI, blood test etc.?)... no one seems to know. Hence involving specialists is necessary. This means need for funding. Is anyone interested in funding such a thing, and I am not talking about a clinical trial which would be much more expensive AND would require a LOT of commitment... this machine needs to be used 40 minute twice a day every day. Would boys in both STS treated and PLACEBO group have to go to a certain office 1 hour every day to use the machine? Would they be trusted to use the machine properly at home w/o skipping sessions every day for the next 6-12 months? And the list continues.
It is as simple as this. If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do. And Cheryl, I am not using STS for Robert at the moment but I am grateful that many parents using it shared their experiences with me privately. You are an open minded person, hence I am confident that you could also find the information you are looking for if you ask.
Thank you Ofelia for the kind words, they are much appreciated. You see, until this week I had no idea there was a private STS trial going on anywhere, let alone that there were 36 families involved. I thought one might be coming up but was unaware of anything else, because I don't have a path into "their" secluded world. Nor do I have the time, like you, to follow each parent individually even if I figure out who they are. I thought that's why we as a group of dmd parents had PPMD and FB.
I hope your assumption turns out correct, that somebody will provide data, information or opinions eventually about their STS use, good and bad. All information is important. But with such a secluded group who've splintered themselves off from the rest of, I can't hold my breath.
Much congratulations to Curtus Renard for meeting with Paul and myself (quite awhile ago now) and for his honesty in coming forth to share his son's information regarding stem cell experiments. Although his input didn't mean we personally were ready to sign Alex up for treatments, Curtus did the right thing. He is extremely honorable and I'm not sure how many more guys like that are out there.
Ofelia Marin said:Cannot agree more Keith and Cheryl.
We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change) if data is collected in a controlled maner. There are 36 families using the machine now, right? I would assume that most of them would provide information anonymously?
Now more importantly, what variables/tests need to be measured (MRI, blood test etc.?)... no one seems to know. Hence involving specialists is necessary. This means need for funding. Is anyone interested in funding such a thing, and I am not talking about a clinical trial which would be much more expensive AND would require a LOT of commitment... this machine needs to be used 40 minute twice a day every day. Would boys in both STS treated and PLACEBO group have to go to a certain office 1 hour every day to use the machine? Would they be trusted to use the machine properly at home w/o skipping sessions every day for the next 6-12 months? And the list continues.
It is as simple as this. If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do. And Cheryl, I am not using STS for Robert at the moment but I am grateful that many parents using it shared their experiences with me privately. You are an open minded person, hence I am confident that you could also find the information you are looking for if you ask.
If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
Ofelia Marin said:If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
The question is how badly do we want the answer regarding STS. A $350,000 trial, or even a pilot trial at $100,000 represents a pretty significant percentage of the research grant budget of an organization like PPMD. According to their annual report, there were $866,000 in research grants awarded in 2009. The resources are not limitless. In a perfect world, we can explore every avenue with even the slightest hope for success. In our world, decisions have to be made on where to focus our efforts and limited resources. Do we want to take resources away from other exploring other potential therapies to get an answer on this one? Some will say yes, some will say no.
At the rate that Dr. Rhodes' business is expanding, he should have enough money before long to fund his own scientific studies. $4000 apiece, times 36 machines is $144,000. If the machine worked, and he could prove it scientifically, there's an enormous profit potential. 20,000 new cases a year times $4000 is $80 million. Per year. And - if it was a proven success, he could probably charge much more than he is now. Capturing even a small part of that market makes for a pretty nice little business.
© 2022 Created by PPMD.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service