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Thread: Scoliosis Awareness Week

  1. #1
    Join Date
    Jan 2007
    Posts
    65

    Scoliosis Awareness Week???

    Hi all,

    Dont know quite where to put this thread on this forum, so I'm just gonna put it here since it is a "non-surgical" idea.

    I don't know if any of you have noticed, but the kids on Spinekids.com are running a thread about uniting together across the country and even the world during the first full week of March (4-10) to educate people and raise awareness of scoliosis in their schools and communities. Leave it to the kids to come up with a good idea, eh?

    Actually, I was wondering if there already is a national scoliosis awareness week/month or some such thing out there? Does anyone know? Does the NSF sponsor anything like this? Has congress or the President ever made an official declaration for it? Personally, I think it is a great idea and one that we should all endorse and get involved in.

    The kids are talking about doing presentations in their classes to let other kids know about scoliosis. I think that I will try to do the same thing in Spencer's regular ed class during the same week to at least show my solidarity with the movement.

    What do you all think?
    Last edited by Spencer's Dad; 01-22-2007 at 07:44 AM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  2. #2
    Join Date
    Aug 2004
    Location
    ny
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    1,805
    I think it's a great idea. I, for one, did not know a whole lot about scoliosis prior to David's diagnosis.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Jan 2007
    Posts
    65

    Ping!!

    Come on people. I can't believe only the spine kids are interested in raising awareness about scoli. Are there not things we can do to bring these issues to the public awareness?

    Read the spine kids thread here:

    www.spinekids.com/boards/showthread.php?t=8540

    and lets figure out how to support their cause!!!
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  4. #4
    Join Date
    Aug 2006
    Posts
    369
    Count me in. How do we get Scoliosis week nationally recognized.

    Christine

  5. #5
    Join Date
    Jan 2007
    Posts
    65

    National Bone and Joint Decade

    Thanks Christine and Maria ... if its only us three, it will be three more than before, eh?

    Some information on things that have already been done.

    The President of the United States has declared the decade from 2002 to 2011 as National Bone and Joint Decade.

    Read the proclamation here:

    http://www.whitehouse.gov/news/relea...TOKEN=23638286

    This was done in conjuction with the international Bone and Joint Decade initiative targeting the care of people with musculoskeletal conditions--bone and joint disorders.

    You can view their website here:

    www.usbjd.org

    Maybe we can tap into this initiative.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Robert,

    Sounds like a good start.

    I did some speaking last fall on behalf of Shriners Hospitals, which in a roundabout way also educated folks about scoliosis and other conditions, and I really enjoyed it. I'm at a bit of a loss though to think of what specifically I could do for this project, except perhaps a school presentation, but I'll be glad to help in any way I can. My e-mail address is mariaf305@yahoo.com.

    take care,

    (p.s. How is Spencer doing?)
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    You might want to do a little more research before doing too much work - don't want to re-invent the wheel here. There are several groups doing scoliosis awareness. Last year the Scoliosis Association had a nationwide movement to hold "walks" in local areas to raise money for scoliosis research and awareness. I haven't heard of anything planned for this year, but that doesn't mean there isn't something in the works. I guess my suggestion is to find someone who's already done something, then move forward and do something again. If someone tells me what to do, I'll be happy to do it. Not sure I have time to be on an organizing committee right now, but I'm all for any awareness we can get. Count me in!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  8. #8
    Join Date
    Jan 2007
    Posts
    65
    Carmell, you are exactly right....as usual. We don't want to reinvent the wheel here.

    Actually, when I first posted this here I really was hoping for responses similar to what is happening on Spinekids.com. People who would want to join together at a common time (March 4-10) in commemorating, remembering, educating, and pubicizing scoliosis in their own communities. I really wasn't envisioning a national fund raising campaign or mobilizing a political army or anything like that. Just a grassroots effort at making more of the people around us aware of the issues facing people with scoliosis. I mean, honestly, if I can talk to a bunch of 4th graders today and prevent a kid with a boston brace from getting teased in 8th grade a few years from now because those 4th graders remember what they learned, then I think that is something I want to try to do.

    So here are some ideas that I think I will try to do during the same week the spinekids are doing their thing:

    1- make a presentation in Spencer's classes about his surgery and scoliosis
    2- wear a green shirt on wednesday (to show solidarity with the spinekids who have decided to do this)
    3- wear a scoliosis awareness button and/or wrist band all week long
    4- write a letter to my senator, representative, governor and other state elected officials urging them to recognize a national and state scoliosis awareness week and increase funding for research into causes and treatments of scoliosis.

    Any other ideas of things we could do? Post them here so we can all know how better to raise awareness of scoliosis in our own communities.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Robert,

    Those are great ideas - and I think exactly what a lot of us were looking for -specific things we could do. (I think you have just become our unofficial leader in connection with this project - LOL!!)

    I agree 100% that if kids learn about scoliosis, or any other condition, early on - and understand it - they are more likely to know how to react to someone they encounter a few years later - and less likely to tease them.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    I have not logged for a while but count me in!!!

    I will ck with Lorena's school about posting awareness bulletins/flyers around the school.

    This is AWESOME!!!
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  11. #11
    Join Date
    Jan 2007
    Posts
    65

    Shirts for scoli week

    Hiya,

    A couple of kids on spinekids.com are producing T-shirts to recognize scoliosis. The first shirt names every kid (at least from spinekids) that had scoli surgery in 2006.

    The other shirt is being designed for scoli awareness week. It will have the words "curves of life" and show a crooked tree on the front and a scoli spine on the back. Assuming she can keep up with demand for the shirts it would be nice to support her effort and buy one for scoli week.

    I was also thinking that her graphics might lend themselves to posters if anyone wants to use posters to promote scoliosis awareness.

    Anyway, just a couple more ideas for publicizing the issues of scoliosis during the week of Mar. 4-10. If you have any other ideas post them so we can all benefit from them.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  12. #12
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    what about petitioning school boards for in-school-scoliosis-screening in areas where it doesn't yet happen, like all of Canada as far as I know.
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  13. #13
    Join Date
    May 2006
    Location
    Toronto, ON
    Posts
    36
    Hey Spencer's Dad,

    I was wondering where you'd get those t-shirts from? They both sound GREAT! and I'd love to have one for scoliosis awareness week. I know you'll probably be able to get the SpineKIDS one through their website, but what about the one with the tree on the front? Please let me know!

    What about the scoliosis rubber bands, does anyone have those? I'd love one of those too!

  14. #14
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    VincySweety,

    I only know where to get the Shriners Hospitals wristbands, not the general scoliosis awareness ones - sorry. Hope you find them.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  15. #15
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    The "tree" shirts are the ones the kids on Spinekids are making, so you should be able to get them through that site. This site, has green Scoliosis bands available. If you type in National Scoliosis Foundation in your address line, it should take you to the home page. Click on "store" and it is simple from there. The Scoliosis Association also has Scoli bands available, but there's are blue. If you want info on them, let me know and I'll try to find it for you.


    Mary Lou
    Last edited by Snoopy; 01-28-2007 at 11:30 AM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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