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Thread: National Scoliosis Foundation

  1. #1
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    National Scoliosis Foundation

    Hi...

    I wanted to put in a plug for the National Scoliosis Foundation, the organization behind our forum. The NSF is a 501(c)(3) charitable organization that survives on individual donations. If you're looking for a place to make a year end donation, please consider them. (Disclaimer: I take no funding from the NSF.)

    http://www.scoliosis.org/donate/

    Thanks and Happy New Year.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  2. #2
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    Can you clarify what the dontations goes toward - do you affiliate with any of the other scoliosis organisations e.g SOSRT or SRS?

  3. #3
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    I disagree with some of his positions but my direct albeit small experience of Joe O'Brien is that he is a stand up guy who is fair as against his own interests.

    I am more skeptical of treatment claims that Joe seems to be.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
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    Quote Originally Posted by burdle View Post
    Can you clarify what the dontations goes toward - do you affiliate with any of the other scoliosis organisations e.g SOSRT or SRS?
    Running the NSF is a full time job. I do not see their budgets or tax filings, so I can't know what their income stream is. I suspect it's relatively small. Joe O'Brien, who runs the NSF, is an honorary member of the SRS. He is also on the advisory board for SOSORT.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  5. #5
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    Hi,

    do you now what the NFS does- how does it justify its existence. I am not asking as a criticism - I just wanted to understand its role.

    In UK we have a similar forum ( well we did but it has been down for a bit) but it exists purely as a support forum and is voluntarily run.

    What else does NSF do and how does it keep up with advances made by other bodies such as SRS and SOSORT?

  6. #6
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    Quote Originally Posted by burdle View Post
    What else does NSF do and how does it keep up with advances made by other bodies such as SRS and SOSORT?
    I am guessing due to his involvement with SRS and SOSORT, Mr. O'Brien is aware of what those two bodies are doing. But he doesn't participate on the forum much.

    Mr. O'Brien has published at least one paper as a co-author in the field of scoliosis but I am not sure if he has research training or what his role was on the paper.

    I believe he is or has been a supporter of the Spinecor brace despite the fact that pediatric orthopedic surgeons didn't see much evidence of efficacy and therefore largely don't offer it leaving chiros to step into the vacuum.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    I think it is of the upmost importance that bodies such as this one are up-to-date.

    The forum itself is invaluable for patient support etc. but we are all 'amateurs' and we need to be aware of the 'professional' opinions and latest initiatives in order to make what could be life-changing decisions.

    I cannot comment on donations until I understand fully what they are for and to what use they are put, but I am very keen to ensure that much needed charitable donation is properly targeted and efforts are not needlessly duplicated.

  8. #8
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    The home page tells what their mission is.

    Early screening seems to be a main focus. Before VBS and VBT, I was not a fan of the early detection programs. But now that these treatments are available, I think early screening is very important.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    School screening is important because growing up and not knowing is a delicate matter.... I visited doctors while growing up in the 60ís and early 70ís for various reasons only to be surprised with the sudden diagnosis (without x-rays) at age 16 after a car accident. I wondered why I was visiting medical doctors? Maybe scoliosis wasnít a priority for GPís at that time because they didnít have the answers? I donít know how I slipped through the cracks. They didnít screen for scoliosis in schools back then.

    School screening is a chance that ďsomeoneĒ(with some training) looks at our backs and says something. I did notice my lumbar hump in the mirror but didnít say anything. I donít know why I didnít say anything? I was a kid, and kids will be kids. Scoliosis from that point on created a lot of questions.....and worry.

    Donating to NSF helps since it is a group of people trying to work on scoliosis solutions.....and the forum is a good support tool. A soon as its lost, then we revert back to to dark ages....like it was many years ago before internet and support forums. Those were scary times as many of the elder posters know. It would be nice if some of the SSO members would register here on NSF. Its like in Star Wars when they arrive to find out a planet or system has vanished and created a black hole.....

    Some scoliosis solutions will work, and some wont, but we still appreciate the effort and persistence....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
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    I absolutely agree about the forum which is invaluable for support. It was the work of the NSF itself that I was asking about. There are a number of bodies in existence for Scoliosis - HARMS, SRS, SOSORT and if I am honest WHAT are they all doing??. Nothing seems to have changed - they all say that more research is needed into the cause of scoliosis and moreover into conservative evidence based treatment. SOSORT concluded in 2012 that there was no evidence to suggest that manual therapy doe not help just that there was no evidence that it does. Well it is now 2017 and I cannot see any new research into conservative therapy. I know I am muddling the two research areas but they all recognise the increase in adult scoliosis in an aging population but there is no targeted conservative therapy available still ( other than wacky chiros). Speaking as an aging adult - I am asking what is actually changing- what help are we getting?

    I guess I was interested to know how NSF fits in and how it keeps abreast of any new research and how it filters it down to its members?

    By the way I have just had an article published in the Journal for Private Physiotherapists in UK - 'a patients perspective'

  11. #11
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    Quote Originally Posted by burdle View Post
    I absolutely agree about the forum which is invaluable for support. It was the work of the NSF itself that I was asking about. There are a number of bodies in existence for Scoliosis - HARMS, SRS, SOSORT and if I am honest WHAT are they all doing??. Nothing seems to have changed - they all say that more research is needed into the cause of scoliosis and moreover into conservative evidence based treatment.
    Apparently there are only three major research groups in the world studying scoliosis. That is going to limit progress. Even though a few percent of the world's population has scoliosis, only a small fraction become surgical so maybe it is considered an orphan disease.

    SOSORT concluded in 2012 that there was no evidence to suggest that manual therapy doe not help just that there was no evidence that it does. Well it is now 2017 and I cannot see any new research into conservative therapy. I know I am muddling the two research areas but they all recognise the increase in adult scoliosis in an aging population but there is no targeted conservative therapy available still ( other than wacky chiros). Speaking as an aging adult - I am asking what is actually changing- what help are we getting?
    On the issue of lack of evidence against manual therapy, that's pretty weak given the number of years it has been investigated. At some point, the absence of evidence is evidence of absence. We do know the broad parameters of PT effectiveness. We have isolated cases of success (a yoga woman, a breathing woman [Hawes], an Italian therapy woman, etc.) who have avoided surgery to date (not necessarily avoiding being surgical). The vast majority apparently do not respond for whatever reason. We know that. The outline of a motif is there.

    If we include non-fusion surgery under "conservative" then there has been some progress... VBS and VBT. VBT is apparently slowly expanding to the adult population. That is the best hope I see for adult patients to hope to avoid fusion as far as I know which isn't far.

    I guess I was interested to know how NSF fits in and how it keeps abreast of any new research and how it filters it down to its members?

    By the way I have just had an article published in the Journal for Private Physiotherapists in UK - 'a patients perspective'
    Congratulations! I would love to read it.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Quote Originally Posted by titaniumed View Post
    School screening is important because growing up and not knowing is a delicate matter.... I visited doctors while growing up in the 60ís and early 70ís for various reasons only to be surprised with the sudden diagnosis (without x-rays) at age 16 after a car accident. I wondered why I was visiting medical doctors? Maybe scoliosis wasnít a priority for GPís at that time because they didnít have the answers? I donít know how I slipped through the cracks. They didnít screen for scoliosis in schools back then.

    School screening is a chance that ďsomeoneĒ(with some training) looks at our backs and says something. I did notice my lumbar hump in the mirror but didnít say anything. I donít know why I didnít say anything? I was a kid, and kids will be kids. Scoliosis from that point on created a lot of questions.....and worry.
    I understand your reasoning here. I was just concerned about the issue of diagnosing a medical problem and not having any proven treatment until the surgery threshold is reached. We know there is a lot of unnecessary and ineffective treatment. Screening adds to that problem.

    It's a new ball game now with VBS and VBT. There are surgical windows for those things so screening is now vital in my opinion.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #13
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    Sharon, I agree....itís a tough situation making scoliosis decisions with kids. In general, I would probably do nothing. (Unless its extreme)

    Stapling and tethering is still surgery....promising yes, but still surgery. For kids, you have to think 10 times harder.

    I have had women ask me if they should get new boobs. I donít know why this happens to lucky me, maybe they want some sort of ďtechnical boobĒ related answer to jack up the male brain. (smiley face)

    The answer is NO. (stern face)

    For Burdle, yes they do studies....lots of them, but they still need to so much more.....For adult conservative methods that involve degeneration, seems unlikely, for a cure, we can only wait. I donít think it will happen in our lifetimes.

    Awareness is a good thing....NSF does this.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #14
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    Yes VBS and VBT is still surgery. But it is non-fusion surgery. The dream of non-surgical treatment that reliably avoids surgery may never be realized. Until they can identify and address the etiology, that may be as good as it gets for a while.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    Quote Originally Posted by titaniumed View Post
    Sharon, I agree....it’s a tough situation making scoliosis decisions with kids. In general, I would probably do nothing. (Unless its extreme)


    For Burdle, yes they do studies....lots of them, but they still need to so much more.....For adult conservative methods that involve degeneration, seems unlikely, for a cure, we can only wait. I don’t think it will happen in our lifetimes.

    Awareness is a good thing....NSF does this.

    Ed
    I don't think we should confuse 'cure' with ' treatment'!. My 'beef' is that because we have no cure we don't bother with investigating treatment other than with NSAIDS or OPIODS. Because manual therapy costs money and because conservative therapy insists on evidence based results we have no targeted therapy available and so become victims to charlatans. I benefit from manual therapy because it helps me move muscles locked in spasm that I can't move myself doing ordinary exercise, thus I get pain relief. Patients like me should not be denied access to this. ( I know I can pay for private treatment but this itself is limited because private works on the same model as public) Manual therapisst do not get involved in scoliosis treatment because the system itself does not get involved.
    Patients not at surgical level OR patients like me who are but are avoiding surgery should not be denied treatment!
    @Pooka - I could email it to you if you like?
    Last edited by burdle; 01-09-2017 at 05:24 AM.

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