Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved… Continue reading A year of milestones for Team Gleason – and they’re not slowing down.
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MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below… MS: The Diagnosis… Continue reading MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
“It does not define me!” Member Marcia shares her story for Myeloma Action Month
March is Myeloma Action Month, a time to raise awareness for the second most common blood cancer that affects 750,000 people worldwide — and over 2,500 PatientsLikeMe members. One of those members is Marcia (marcia_holman), who was given six months to live when she was diagnosed. Fifteen years later, Marcia sat down with us to… Continue reading “It does not define me!” Member Marcia shares her story for Myeloma Action Month
Touched with fire: Reframing the dialogue of bipolar
We’ve talked a lot with new PatientsLikeMe member Paul, diving into issues like getting a diagnosis, management and coping, and overcoming stigma. Now, Paul is sharing how he’s trying to change the conversation about bipolar through his debut feature film, Touched with Fire. Here he talks about framing Touched with Fire as a love story because in a condition defined… Continue reading Touched with fire: Reframing the dialogue of bipolar
Meet Angela from the PatientsLikeMe Team of Advisors
Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer. Angela sat down with us recently to talk about the new challenges of leading the life she wants… Continue reading Meet Angela from the PatientsLikeMe Team of Advisors
PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study
CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life. The partnership aims to advance cancer… Continue reading PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study
“My data is going to empower the next patient” — PatientsLikeMe member Letitia shares her mission to #PayItForward
Many of you have already met Letitia, an active member of the epilepsy community and part of the 2014-2015 Team of Advisors. In her Patient Voice video, Letitia shares how her research on the site led her to the surgery that changed her life – she’s been seizure free for more than three years. Now,… Continue reading “My data is going to empower the next patient” — PatientsLikeMe member Letitia shares her mission to #PayItForward
Touched with fire: Eliminating the stigma of bipolar
PatientsLikeMe member Paul is a filmmaker who’s harnessed his bipolar into creativity, most recently in the debut feature film, Touched with Fire, which he wrote, directed, edited and scored himself. In the last month, we’ve spoken with him about his diagnosis and what he does to cope. Now he’s opening up about fighting the stigma… Continue reading Touched with fire: Eliminating the stigma of bipolar
Meet Phyllis from the 2015-2016 Team of Advisors
We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she… Continue reading Meet Phyllis from the 2015-2016 Team of Advisors
Oceans of Hope: An interview with PatientsLikeMe member Beth
Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people… Continue reading Oceans of Hope: An interview with PatientsLikeMe member Beth