Please help with your suggestions, opinions, thoughts!

[Guest guest]

Hi all, We started our journey with Matson almost 6 years ago and & this

group have given us the support we needed from the beginning!

At the most recent Early Onset Scoliosis meeting (an organization of the

pediatric orthopedic surgeons in the USA and from around the world, focusing on

scoliosis in young children), the process of creating a public registry specific

to Early Onset Scoliosis, including all types of scoliosis effecting young

children, was initiated. Dr. Kit Song is the lead investigator on the project.

The goal of this registry is to help families identify accredited centers and

surgeons and be able to learn more about treatment preferences, infection rates,

outcomes, current research, etc. The hope is that, as a successful registry is

built and used, it will lead to the establishment of a National Foundation for

Early Onset Scoliosis. Development of the Foundation would serve to increase

public knowledge as well as public support and provide a place where families

can connect, share experiences and valuable information, as well as be a place

to offer invaluable personal support.

One of the anticipated challenges in establishing a public registry is ensuring

that the best information is available to answer the most frequently asked

questions, and the questions asked initially by parents and family members new

to the diagnosis. Dr. Song has invited a small group of parents to help with the

development of this registry and now we are coming to you for your insight and

expertise. We are asking that you provide suggestions as to what questions you

had initially, and/or what information would have been helpful to you as your

family started this scoliosis journey. Possible thoughts to get you started:

" what was the hardest part for your family in choosing a treatment or in

choosing a center to receive treatment? " and " what information were you missing

when you learned of your child's diagnosis? " . Please feel free to submit your

thoughts on the site that you are receiving this request (VEPTR board, facebook,

etc) or you are welcome to contact any of us individually using our email

addresses listed below. We need your input no later than February 29th in order

to compile the data and move forward through the process. We will gather the

information and fine tune it, with further input from you, until it is specific

enough, yet very informative, to be a good starting point for the public

registry. Please know that regardless of the treatment options you chose or are

considering, we still need your participation! The registry and foundation are

being established to provide information and support for the broad spectrum of

Early Onset Scoliosis, not any one treatment approach. Thanks for your help in

furthering public awareness and working to provide transparency regarding a

diagnosis that we all know is complicated and scary.

Carmell Burns - boulderfam@...

Colleen Diedrich - colleendiedrich73@...

Fournier - mattnsteph4nier@...

Wilcox - bluemoon9990@...

Thank you for your time, thoughts, and consideration!Please feel free to contact

me with any questions at all.

Best regards always,

Fournier

Mom to Tyler (9), Lily (5), and Matson (6) diagnosed at 6 months, 5 casts, 2

braces, and Dual Growing Rod Surgery 3/10, 3 lengthenings, 4th lengthening

scheduled for May 2012