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
I think we should have party hats, too, This is the type of venture that calls for lots of celebration and noise to get things rolling. I am so excited to be part of this Big Data and hope everyone gets on it today. The sooner we tell our individual history, the quicker we can shape criticial research. Thanks for sharing this good news!
ReplyDeleteDo you have to have MS yourself to join? A dear friend of mine was recently diagnosed, and I want to help.
ReplyDeleteHey Stephanie. I am actually not entirely sure and will default your question to the iConquerMS team. Stay tuned on our reply. Take care, Christie.
DeleteFriends: while the goal of 20,000 is 20,000 people with MS, we welcome everyone and research will benefit greatly for having people w/out MS enroll and participate as controls. Hope this additional info helps. Take care, Christie
ReplyDeletewe welcome the data from everyone - if you do not have MS you will still see the same questions as the people with MS EXCEPT when were you diagnosed and what type of MS do you have. We are also open to people outside of the United States. So, please join us and share you data. There may be a clue in why you don't have MS and your friend does. We never know what will be uncovered.
ReplyDelete