7 great things accomplished by patient powered iConquerMS

I am so delighted to share that the iConquerMS initiative has made a lot of progress these last few months. Membership keeps rising and a lot has been achieved in a short time. What a great team to be a part of!

The focus continues to be facilitating research on stuff that matters most to us, folks living with Multiple Sclerosis. And, it involves MSers across the entire process: idea building, collaboration, protocol development, project results, and sharing of final research results.  Pretty cool, right?

So, I thought I would share some of the recent highlights. Here are seven great things accomplished by iConquerMS so far:

1. Launched the new data collection and patient engagement portal
2. Registered over 2,250 people living with Multiple Sclerosis
3. Collected a lot of health data – from about ½ of those registered
4. Garnered support from MS clinics, neurologists, MS nurses, MS advocacy organizations, pharmaceutical companies, and collaborators
5.  Created its first research project that will focus on how folks with MS get insurance coverage
6. Collaborated with PPRN (patient powered research network) on a study proposal to examine the effects of depression, anxiety, and other mental health issues in folks with Multiple Sclerosis
7. Planned four ‘Research Studios’ events, which will bring together small groups of MSers and researchers to brainstorm on research topics. These are scheduled to launch this fall 

Of course that’s not all as the full list of accomplishments is much longer. Also, several research projects are underway, all at different stages of planning and ideas keep coming in from those MSers registered - teams are very busy!

iConquerMS puts people with Multiple Sclerosis at the center of research in the fight against MS. We’d love for you to be a part of this so please join us today by clicking on the link here: https://www.iconquerms.org .

Take care,

Christie

I'm conquering MS, 'wanna join me?

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

The MS Buzz #5

The MS Buzz #5 is now available! Last week's chatter? Depression in MS, the Romberg Test, the benefits of MS and the latest MS drug news. Click here to read more: the MS Buzz #5.

The MS Buzz

Twitter is a fantastic resource in getting all the latest and greatest information on life with MS. So, I invite you to check out my first edition of "The MS Buzz". Each week I will share Tweets from the MS community, comments other folks have made that I found valuable and interesting. Enjoy!

Click here to check out the first edition: The MS Buzz #1. 


Best!
Christie

2010: Exciting Progress Made in MS Research

Friends,


The National Multiple Sclerosis Society just published this great news detail on the progress made in 2010 in the field of MS research. Gilenya, Cladribine, Teriflunomide, anitoxidants, CCSVI, intestinal parasites, myelin repair, stem cell-based therapy, Ampyra, Nuedexta, depression, environmental factors, and so much more. Click here to read their recap. 


No doubt, 2010 has been an amazing year. Inspirational and hopeful.  


Best,
Christie