Tuesday, February 17, 2015

iConquerMS

A few weeks ago I heard about a new initiative called iConquerMS. As most of you know, I am interested in any way to raise MS awareness and to help further research. I first learned about the website through the Accelerated Cure Project (ACP) on Facebook. I was asked by the ACP if I would be interested in speaking with the Boston Globe about iConquerMS. At the time I didn't know much about the website, but jumped at the chance to bring awareness to MS and to be able to share my story. I quickly joined iConquerMS and learned about it for the interview which would take place about a week later.

iConquerMS is a website for and by people with MS where you can sign up and take surveys about your health and symptoms, ultimately to share your electronic medical records if you choose. The website has directions how to request them from your doctors. Researchers will be able to have access to this information and use it in their MS research. Your identity will be kept confidential. iConquerMS would like to get 20,000 people to sign up by September. Also, as a member you can suggest questions and topics to the researchers. I encourage everyone to check out the site and sign up. I think everyone's goal is to find a cure, which this can help with, but it can also help find more disease modifying drugs and other ways to slow the progression of MS. There are many possibilities!

I spoke over the phone with Boston Globe reporter, Robert Weisman about my experience with MS and the iConquerMS website. It was a great experience and the article came out February 4, 2015. You can read the article here.

I was honored that the ACP thought of me to speak about iConquerMS and I am proud to support it. Also, my friend, Laura Kolaczkowski is the lead patient advocate for it and whenever I hear her name involved, I know it is a worthy cause! I was fortunate to meet Laura last September when I attended a MS fund-raiser at Fenway Park which you can read about in my last blog post The Accelerated Cure Project for MS. Another great thing about iConquerMS is that many organizations have come together to support this website such as the National MS Society and Can Do MS just to name a few.
I can't believe September was my last blog post! I have been struggling with fatigue while I am working full time. So, Bean's Blog got tossed to the back burner. However, iConquerMS is worthy of me pushing myself a bit to share this great website with you.

Let's hope we can get 20,000 people to sign up and let's get this research started!







1 comment:

  1. Thanks for helping to spread the excitement about iConquerMS - We need everyone to share and come on board this project.

    ReplyDelete