From time to time groundbreaking stuff happens
on the planet that gets us really jazzed up and the launch of iConquerMS.org is no
exception. As someone who lives with Multiple Sclerosis, this project is so
very near and dear to my heart and I am super proud to be part of iConquerMS team
and watch this go live.
So, you
might be wondering, “Who/what exactly is iConquerMS.org?”
iConquer MS.org is a patient driven initiative that focuses on using
‘big data’ in the form of research suggestions and health data, to tackle all
kinds of issues important to the MS community, including finding that cure.
Via an online portal, MSers will register, contribute information, and
suggest ideas for research. Researchers will then review the idea, analyze the
data, and gain important insights on varying aspects of Multiple Sclerosis. This
MSer: Researcher collaboration may lead to better diagnostic procedures,
treatment recommendations, and the ultimate goals of preventions and cures.
Yes! Throw confetti in the air!
After spending some time with the iConquerMS.org team, doing
a bit of beta testing on the site, and registering myself, I am getting more
and more excited about this project. Here’s why:
- iConquerMS.org is driven by folks living with Multiple Sclerosis. Yep, we’re steering the MS research ship. iConquerMS.org is an initiative by and for folks like us, living with MS, who truly understand the unique needs of MSers and want to contribute ideas and health data to fuel research. I love this because it’s patient driven, not a bunch of folks wearing goggles and white lab coats while holding test tubes in a back room laboratory, as my friend Stephanie Butler would say.
- iConquerMS.org will really focus on the MS issues that matter most to us because research questions will be raised by the MS community. These questions may include: what causes the disease and what strategies might prevent it, cure it, or slow its progression; which treatments work best in which individuals; what factors affect the progression of the disease; and what insights can be found to enable new and more effective treatments to be developed. Yes! More confetti in the air!
- Things may actually move along faster. Advances in research may occur sooner as MSrs play a more active role by facilitating the use of our most personal asset – our own data, including lifestyle habits and health histories.
Please join us in this new way to fight MS. Let’s speed
things up. Let’s use “big data” to truly make an impact. Let’s work closely
with researchers to get closer to what matters most to us. Let’s work together
on this important journey.
Simply go to https://iconquerms.org and click the “join now”
button.
By the way, this amazing project is backed by all kinds of
respected groups including: National MS Society (NMSS), and the Multiple
Sclerosis Association of America (MSAA). And, Accelerated Cure Project for MS
(ACP), Feinstein Kean Healthcare, and Arizona State University, and Patient
Powered Research Network. Pretty hefty support.
Take care,
Christie
