Hey there, Modern Day MS reader! You’re here because you want to share and learn about MS, right? You should join iConquerMS.
Here’s your chance to be an active participant and share even more in this fight and it doesn’t require money, fundraising or any of the usual contributions. Instead I’m asking you to answer a brief series of questions about your experience with MS.
My Ask of You!
Join me at iConquerMS, a people powered research network, that has now enrolled over 4,400 people affected by MS. All 50 states and Puerto Rico have people with MS who have joined us and we also have 300 more people from 25+ countries so it is an international effort.
What does joining mean? All of your information is de-identified and you begin by sharing your basic demographic information of age, date of diagnosis and a few other things that help us understand your experiences with MS more.
Do You Know REAL MS?
Then every six months you will receive emails announcing the open period of REAL MS (Research Engagement About Life with MS), a longitudinal study that asks you a series of questions. In total, it takes less than 45 minutes for most people to complete the entire survey and the good thing is you don’t have to do it all at once.
You can also submit your own ideas of topics you would like us to propose to researchers. Seriously, has anyone ever asked you for your ideas about what would make living with MS better? We do at iConquerMS.
We also have researchers ask us to check with iConquerMS members about their experiences on specific topics such as adult day programs, access to insurance and other key topics. All of their results are shared in an open access way for everyone to learn from.
Accelerated Cure Project and more
So who is iConquerMS? iConquerMS has over 40 members in their governance, and the majority of them have MS. We also have representatives from the major MS advocacy organizations, and clinicians.We are hosted by the Accelerated Cure Project for MS, a Boston based non-profit founded almost 15 years ago by a person with MS. This person knew we need better ways to collect and share data to find a cure for MS, and he acted on that need. Listen to this webinar below for more information.
Do it Today!
There is so much I could share, but a lot of that information is on our website and you would get bored reading my words. The critical thing I can tell you is we are people with MS conducting important research to improve our lives and we need everyone to join us at www.iconquerms.org.
Please join it today and help us conquer MS.
Laura Kolaczkowski was diagnosed with MS in 2008. She is the Co-principal investigator for iConquerMS, a People Powered Research Network funded by PCORI, and the lead patient representative. Her interests have taken her into the world of patient centered research, which is meant to deliver answers that are meaningful to the MS community. She is medically retired from the University of Dayton thanks to her MS, and lives with her husband in Ohio.
Laura writes regularly for MultipleSclerosis.net and authors the column Engaging Thoughts for Multiple Sclerosis News Today, and has contributed to a variety of other online sites. She presented Putting the Focus on You, a 2017 MS Awareness month program for the MS Foundation about iConquerMS, and the complete audio with slides explaining more about iConquerMS and PCORI can be found here.
You may also enjoy reading: 5 Ways To Make Your Home MS Friendly, Having The Best Sex Possible With Multiple Sclerosis and Cinnamon Helps To Suppress Symptoms.
Please watch and share our MS Awareness video.