The social network for people living with multiple sclerosis

Infographic MyMSTeam RRMS Treatments

In just one year, MyMSTeam has grown from 30 people with multiple sclerosis in the San Francisco Bay Area to nearly 20,000 MS-ers across North America. Since we launched MyMSTeam.com in the Spring of 2013, we’ve been asked by spouses of people living with multiple sclerosis, and the parents of children with multiple sclerosis to be permitted to join the site. We’ve also received requests from those diagnosed with MS to allow their loved ones to join. With the utmost respect for their wishes, we waited until we could ask the MyMSTeam.com community (originally created just for people diagnosed with MS) what they wanted.
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A few months ago we shared the results of a MyMSTeam survey on the topic of clinical research.  85% of you who responded to that survey said you’d like MyMSTeam to notify you of relevant clinical trials in MS as they come up.   We took that to heart.    As a first step, we recently partnered with Biogen Idec to share news of the ALLOW study which focuses on people with relapsing-remitting MS who are currently taking a standard interferon beta (IFN-β) therapy such as AVONEX® (interferon beta 1b), BETASERON® (interferon beta 1a), or Rebif® (interferon beta 1a).  The study will be conducted in select cities around the United States (a complete list of which is at the bottom of this post).
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The following is a personal story from Kate, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’  Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

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logoms

Summary: In a recent survey of the MyMSTeam community, 85% of respondents said they’d want MyMSTeam to notify them of upcoming clinical trials in MS that may be relevant to them.  While the overall interest in trials is strong,  awareness and actual participation is relatively low.  74% report that their doctor has never talked to them about participating in clinical research for new MS treatments.  See below for full survey results, and what we at MyMSTeam are doing to help our members learn about trials that could be relevant to them.
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The following is a personal story from Kris, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’ Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

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The following is a personal story from Anissa, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’ Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

www.MyMSTeam.com

Anissa, one more inspiring member on MyMSTeam, the social network for those diagnosed with MS.

 Anissa’s Story

I still clearly remember the last time I was able to run. June 23, 2006 started out to be a great day. After breakfast the kids and I decided to go outside and play. We started a touch football game. We were all running from one side of the yard to the other, throwing the ball. Still, clearly in my mind are the way the clouds looked that day, high wispy, they looked as if God himself had taken a paintbrush and purposely left streaks across the sky. There was nothing ominous about them, just pure beauty. My legs were carrying me from one part of the yard to the other, chasing the kids. The sounds of the laughter coming from them will forever be etched in my mind and soul.
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MSWorld logo

We at MyMSTeam are excited to announce our new partnership with MSWorld, a leading multiple sclerosis support organization and community. Together, the organizations will continue their pledge to empower people living with multiple sclerosis.

“We are proud to align with MSWorld, an organization that has pioneered the way for those living with MS to find resources and vital information,” said Mary Ray, co-founder of MyMSTeam. “MSWorld shares our passion for bringing together the best MS resources and contributing collectively to the greater MS community. MS is a chronic condition that is filled with more questions then answers. Our complementary services work together to bridge that information gap and provide the MS community the support they need from those who ‘get it’.”
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Part 1

Saying

Maximize MyMSTeam, by sharing a little bit about yourself. This two-part series is to help you get to know great people on MyMSTeam. When making valuable connections and friendships, it’s always valuable to start with oneself.

Begin With You

Getting started:

Consider the value of customizing your own profile on MyMSTeam. Whenever we hear something kind or insightful from someone, we have a natural tendency to want to know the person who said it. At a glance, a photo of yourself adds more personality, and builds trust in the community since your profile photo can be a large part of your identity on the site.
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Part 2

Friendship

Breaking the Ice

This is part 2 of 2 from the series is to help you get to know more great people on MyMSTeam. When making valuable connections and friendships, the first place to start is with oneself (see part 1 here). The next part is even easier.
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