5 posts tagged “National MS Society”

“We Keep Moving” with the National MS Society of Greater New England

Posted April 7th, 2010 by

Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners.  For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new “We Keep Moving” campaign.  The NMSS of Greater New England is helping spread the word about our site and the PatientsLikeMeInMotionTM program and we are happy to report that six of our 3-star patient members (to date) will have teams sponsored by PatientsLikeMe at MS Walks in the New England region this Spring.

2271 (Molly) During MS Awareness Week last month, NMSS launched its “We Keep Moving” campaign to “catapult our movement toward a world free of MS.”  What’s that campaign all about and why is it important for patients?
todd_challenge08_041c1 (Todd) Living with multiple sclerosis is a challenge, no matter where you are. Imagine what it’s like living with MS in an urban high rise — or in rural America where the closest MS specialist is 250 miles away, by bus. “We Keep Moving” is a website that will chronicle a ten week journey across the country. Unique stories and perspectives — challenges, triumphs and everything in between — will be shared. Submit your story and share in the journey as we learn about how people keep their lives moving forward. Go to www.wekeepmoving.org. This initiative is supported in part by Novartis Pharmaceuticals Corporation.

Greater New England Chapter member, Anna from Shrewsbury, is a finalist this week in the “We Keep Moving” video contest, and she needs your vote to have her story produced on video!  Read more about her story and vote for Anna here.

2271 (Molly) In 2008, PatientsLikeMe sponsored the MS Challenge Walk in Cape Cod, MA. What a great event!  This year, the NMSS of Greater New England has helped us spread the word about PatientsLikeMe and our pilot PatientsLikeMeInMotionTM program.  What excites you most about this new program?
todd_challenge08_041c1 (Todd) PatientsLikeMeInMotionTM is a fantastic way to motivate people to take action and to generate resources, both financial and human, to fund research into prevention, treatment, and cure of diseases like multiple sclerosis, and to help people whose disease has hurt them financially. Throughout history, the fight against disease has been fueled by individuals raising money for basic science research to unlock the mysteries of a disease and produce clues for curing it. PatientsLikeMeInMotionTM is another channel to communicate with people and help them understand that if they don’t take action to move forward, no one else will.
2271 (Molly) As we wrap up MS Awareness Month, any exciting things happening at NMSS of Greater New England for patients – e.g., research, events, online campaigns?
todd_challenge08_041c1 (Todd) We’re very excited to announce that as of March 1, 2010, Maine, Massachusetts, New Hampshire, and Vermont joined forces to become the ‘Greater New England Chapter’, serving a combined total of 19,000 individuals and families affected by multiple sclerosis.By consolidating administrative functions and by combining the talents of our Boards of Trustees, staff, and volunteers, we can streamline operations, increase fundraising effectiveness, and expand programs, services, and advocacy for those affected by MS.Of course, Walk MS and Bike MS and the MS Challenge Walk are very exciting ways to join the movement to create a world free of multiple sclerosis.  These fundraising events are just as rewarding to the individuals who participate in them as they are to people with MS who benefit from the MS education, support, advocacy, services, and research that the fundraising pays for, and sometimes they are the same people!!

For a complete listing of current programming and fundraising activities, visit www.MSnewengland.org.

2271 (Molly) Thanks, Todd!

A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of img_8741-300x225our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis berlin-lithium-poster-207x3001AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

  • The National SummitInnovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
  • Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
– The PatientsLikeMe Team