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Thread: Scoliosis Awareness Week

  1. #16
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28

    scoli week

    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
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  2. #17
    Join Date
    Dec 2006
    Location
    Sacramento, CA
    Posts
    39
    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.

  3. #18
    Join Date
    Jul 2005
    Location
    California
    Posts
    268
    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

  4. #19
    Join Date
    Aug 2006
    Posts
    369
    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

  5. #20
    Join Date
    Jan 2007
    Posts
    65

    New list of ideas

    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.
    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. #21
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Great ideas, Robert.

    I'd be interested in getting a copy of that form letter to forward to my local representatives.
    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. #22
    Join Date
    May 2005
    Posts
    671
    Ditto what Maria said. I would also be interested in the form letter.

    Renee

  8. #23
    Join Date
    Jul 2005
    Location
    California
    Posts
    268
    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!!

  9. #24
    Join Date
    May 2005
    Posts
    671
    That's a good idea, wouldn't hurt to try - I think I may send an e-mail to the local paper here.

    Renee

  10. #25
    Join Date
    Aug 2006
    Posts
    369

    spinekids shirts are ready

    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
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  11. #26
    Join Date
    Jul 2005
    Location
    California
    Posts
    268
    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 .

  12. #27
    Join Date
    Jan 2007
    Posts
    65

    Letter

    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!!
    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!!

  13. #28
    Join Date
    May 2006
    Posts
    4

    National Scoliosis Awareness Month

    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!
    Debbie, mother of Sarah, my star!
    Idiopathic Scoliosis diagnosed age 10
    Boston Brace from 10-16
    Spinal Fusion T4-T-11, Age 16 - July 2007

  14. #29
    Join Date
    Dec 2007
    Location
    minnesota
    Posts
    100
    omg this is so cool my bday is march 9th i wish i culd do somthing at skool,...but i dont know what! ill prbly make a tshirt tho 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 its gr8
    Danielle
    14 Freshwoman
    December 1st got no head the boston brace
    Pre Brace Curves:18C 25T 30L
    In brace curves: (1/23/08) 16C 20T 22L
    In brace Curves: (5/21/08) 19C 19T 15L
    We're Bringing CURVY BACK

  15. #30
    Join Date
    Jan 2008
    Posts
    5

    Scoliosis testing in UK

    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

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