What does gaming have to do with understanding your own health? When we met Michael Simpson, the CEO of Traitwise, he told us about his online medical and health research tool that uses the principles of gaming engaging you as you learn about your health and how you compare to others who answered the same question. What a novel way to engage a person taking a survey! Wait , there is more! You can create your own survey questions too that others in the community can answer. So have we just flipped the equation? Where surveys are generally given to us by the medical researchers, we get to create our own surveys and tell them about the important research questions that are still unanswered?
I have been involved in doing this work since shortly after my wife, Pauline, was diagnosed with TM in July, 1994. I have been a part of the incredible growth of our organization from 187 people to now more than 9,000 members from more than 80 countries around the world. We have physicians who specialize in these disorders and there are two centers of excellence in the United States. There has likely been more published on transverse myelitis and neuromyelitis optica in the past five to ten years, than was published on these disorders in all of previous medical history. With all of these important developments, it remains that we have a very incomplete understanding of TM and ADEM – these disorders are almost as much of a mystery as they were when we began our work in 1994. We have almost no understanding of the disease mechanism in these disorders, they remain diagnoses of exclusion because we’ve identified no unique biomarker for either TM or ADEM, and there have been no studies or clinical trials on any acute therapies or even symptom management treatments. Our progress in understanding these disorders must be accelerated!
The only way we can learn more about ADEM, NMO, ON and TM is to convince every single one of you who has one of these disorders in our membership to commit to sharing your information with us and with the medical community – researchers and clinicians.
Whether you are currently a member of The Transverse Myelitis Association or you are interested in becoming a member, please fill out the new membership form survey. We are expanding the information in our database in order to make our role in the medical community more supportive and powerful and to increase the effectiveness of our support and networking efforts. Currently, we don’t know the age of our members with the disorders, we don’t know if people were diagnosed as children or as adults, we do not have a clear sense of a person’s diagnosis or what the probabilities are that the diagnosis was accurate. Our new membership form creates the opportunity for us to collect this information.
Our collecting this information creates a critically important opportunity for you to truly participate in research and understanding your own health! You will be able to assist researchers with new research questions, new studies, and we will be able to recruit people into studies and into clinical trials. Without this information, it is very difficult for any one medical center in the country to perform research on a large enough population to generate meaningful results. The Transverse Myelitis Association is the only organization in the world that has access to this information and the opportunity to reach large enough numbers of people to produce meaningful results from studies in these very rare disease communities.
The TMA survey powered by Traitwise is based on user-defined algorithms so individuals with the rare neuro-immunologic disorder, relatives, caregiver, researchers, physicians – anyone can join the TMA, you can volunteer and you can become a part of a strong network of individuals committed to supporting our mission.