Scoliosis Awareness Week

[Spencer's Dad]

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?

[mariaf]

I think it's a great idea. I, for one, did not know a whole lot about scoliosis prior to David's diagnosis.

[Spencer's Dad]

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!!!

[christine2]

Count me in. How do we get Scoliosis week nationally recognized.

Christine

[Spencer's Dad]

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/releases/2002/03/20020325-5.html?CFID=115027&CFTOKEN=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.

[mariaf]

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?)

[Carmell]

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!

[Spencer's Dad]

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.

[mariaf]

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.

[amandap]

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!!!

[Spencer's Dad]

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.

[scoliboymom]

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.

[VincySweety]

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!

[mariaf]

VincySweety,

I only know where to get the Shriners Hospitals wristbands, not the general scoliosis awareness ones - sorry. Hope you find them.

[Snoopy]

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

[arairdon]

Spencer's Dad,

I just found your message about scoli week March 4-9. Good idea. Keep us posted on the shirts. If my daughter will let me I'll plan to speak at her school as well.

Thanks for getting us going.

Ann Rairdon

[harmoniesdj]

Didn't see the t-shirts nor wrist bands on the Spinekids store website. Keep me posted on how to buy because I'd like one of the t-shirts. Thanks.

[CurvySAT05]

The scoli band can be bought through NSF and found here: http://scoliosis.org/store/scoliband.php .
As for the t-shirt for scoli week, it is still being designed and hopefully will be ready to purchase shortly. More details will be posted as soon as they become available.
Mandy

[christine2]

Spencers dad

count me in on t shirts and would love posters for my daughters school. I am going to work on a article for her school's newsletter that comes out in early March. I will include importance of early detection as well as info about how to comunicate with kids that are in braces. My daughter fortunatly is in spinecor so no one but the teachers and close freinds know she is in brace. I do not know of any other kids that have a brace in her school but it would be good info to help to bring awareness and reduce teasing.

Christine

[Spencer's Dad]

Hi all,

Just thought I would post an expanded list of ideas of things we can do the week of March 4-10 to promote awareness of scoliosis in conjunction with the activity being organized by the kids on spinekids.com.

Here it is:

1- make a presentation in classes about scoliosis, bracing, and surgery
2- wear a scoli shirt or a green shirt on wednesday (to show solidarity with alll 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 senators, representatives, 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 (I'm willing to write a draft form letter you can use but you will have to find out the addresses for your elected officials yourself)
5- start a petition to the school board for early detection testing if not already done in your school district
6- write an article for school or local newspaper about what it is like to live with scoliosis
7- put up posters in schools and stores encouraging awareness of scoliosis

Hope this is helpful. If you have more ideas, post them so we can all benefit and choose what will work best in our own communities.

[mariaf]

Great ideas, Robert.

I'd be interested in getting a copy of that form letter to forward to my local representatives.

[flowerpower]

Ditto what Maria said. I would also be interested in the form letter.

Renee

[CurvySAT05]

I was watching the news the other day and thought that it would be a great idea to form an email and send it to the local news stations. Hopefully, whoever reads them will be able to give it a little bit of airtime during that week!!

[flowerpower]

That's a good idea, wouldn't hurt to try - I think I may send an e-mail to the local paper here.

Renee

[christine2]

Hi everyone

The shirts are up at the spinekids site. I just ordered shirts and 2 posters. I am going to order the bands for her classmates off this site.

My daughters school has a newsletter I am going to try to get an article into. Can anyone give me a good link for parents to look at. I know there are some with info about self exames.

I would also like the form letter.

Thank you all

Chris

[CurvySAT05]

For anyone interested in purchasing scoliosis week merchandise it can be found here: http://www.cafepress.com/scoliawareness . There are T-Shirts, sweatshirts, children's and infant's shirts, buttons, posters, and more!!!
Also, the scoli bands can be purchased through the NSF: http://scoliosis.org/store/scoliband.php .

[Spencer's Dad]

Hi all,

Just wanted to let you know that I am working on the letter this week and hope to have it done by early next week. I will attach it to a post when I have it done.

Hope you all have a great day!!

[DebbieP1]

The National Scoliosis Foundation is actively working on an awareness campaign and has received approval for a Nationally recognized Scoliosis Month. There will be two spokespersons, one a college student and (my daughter) a high school student. As soon as the press release comes out, I will post more information. Any and all ideas would be welcome. An awareness t-shirt is in the works already. This should be very exciting!

[ElleBelleCurvz]

omg this is so cool my bday is march 9th :D i wish i culd do somthing at skool,...but i dont know what! ill prbly make a tshirt tho :D green obviously, i believe its wonderful to set up a thing like this and i had no idea that week was scoli awareness if i have a prjct mayb ill include that haha well keep doing what u guys r doing :D its gr8

[tina_emma_megan]

My daughter Emma, 11 years old, underwent scoliosis surgery last March for an S curve of 80 degrees and 70 degrees which had been diagnosed the previous March. Due to fantastic surgeon got curves down to 20 and 18 degrees. After a traumatic time, physically and mentally, she is now doing very well and has gained in confidence as well as height.

She has started a petition to try and get schools in the UK to test children for scoliosis to try and detect the problem before it gets to the need for surgery. The doctor has said that Emma has probably had scoliosis for the past 5 or 6 years and if she had done the forward bend test it could have been diagnosed earlier. Her sister who is 6 has now been diagnosed with scoliosis, although mild they are keeping an eye on it to see if it progresses like Emma's.

Emma would much appreciate if everyone could take a couple of minutes
out of their time to sign her petition which she intends to give to the
Prime Minister to raise this awareness. The petition can be found at
thepetitionsite.com/1/start-testing-for-scoliosis-in-schools

Many thanks and a Happy and Healthy New Year to all. Christine, Emma and Megan

[SpineKIDSAdmin]

Does anyone from NSF have any progress information about this?

My SpineKIDS as well as many clinics have emailed me about Scoli Awareness Week for 2008.

Earlier in the year when we started talking for the first week in March like last year -- I stepped back based on feedback that the National orgs were taking the ball and running with it.

Anyone? I hate not having answers when so many people have emailed me since early March.