Ever wondered why there aren’t better solutions?
Imagine that you are a 14-year-old girl and you have idiopathic scoliosis. You’re getting a huge hump and becoming increasingly curved. Five years of therapy and using a brace have not worked and the only option is extensive back surgery.
Just before the operation you learn that indeed other treatment methods exist that would have helped you avoid surgery but your orthopedist had not told you about them. Unfortunately, for you it is already too late. How would that make you feel?
Sadly this story is not based on fiction, but on reality. It is what happened to my daughter. Tragically, she is not the only one. There are 28 million scoliosis patients worldwide.
Despite all of the good intentions and convincing commitments of policymakers to improve treatment, scoliosis always ends up on the bottom of the pile. Clearly, small-scale awareness campaigns are not effective enough.
It is time for a new approach.
Forming one large, global, nonprofit scoliosis organization via social media will facilitate communication between individuals and groups who feel scoliosis care must be improved.
Bringing together small stakeholder groups, nationally and internationally, will create one large advocacy organization with millions of members, instead of thousands of fragmented groups that are too small to be heard or turn ideas into real changes.
What is the plan?
- Connecting as many people as possible who feel that scoliosis care must be improved by creating a large, powerful organization with millions of followers.
- Raising awareness by means of sharing and acquiring knowledge through social media and blog articles on the organization’s website.
- Start an independent scoliosis think tank that advocates in the name of the association, consisting of specialists, therapists, patients, parents, policymakers and health insurers, who are convinced that changes in scoliosis care are necessary.
- The think tank develops a proposal to reform scoliosis care and presents this proposal to governing bodies/ policymakers.
- Representatives of the think tank are equal partners and take a place at the negotiating table alongside policymakers, specialists and health insurers.
- The scoliosis think tank is responsible for the implementation of new reforms and for their enforcement.
What is the goal?
- Independent research on conservative scoliosis treatment
- Transparancy in non-profit reatment options
- Accessible and affordable scoliosis treatment
- Fewer surgeries
- Fewer patients through prevention and better information
- Reintroduction of school screenings
What is needed?
- Help put this in motion by bringing together patients (young and old), parents, siblings, relatives, friends, patient groups, therapists, etc.
- By bringing these people together and raising awareness about this plan, a large and powerful organization with be created: the scoliosis think tank.
- An internationally organized scoliosis think tank will be formed, consisting of patients, parents and interested parties with specialized knowledge in the field of scoliosis, marketing, web design, etc.
- Are you interested in helping this plan get off the ground? Then Share, Join and Help.
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