jamie heywood

How does ALS make you feel #InThreeWords?

May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.       And, check out 2016-2017 Team of Advisor member Cris’ three words: What are ALS members saying in the forum?    “Enraged, alone, afraid” – Kzueger  “Uninvolved, sorrowful, useless” – mbond0623 “Frustrated, compassionate, claustrophobic.” – jimig “Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others” – bountiful “Helpless, angry, pissed off.” – MsJLB   Let’s spread the word and end ALS together.   Share this post on Twitter and help spread the word.

You helped us reach our goal for #24DaysofGiving!

That’s right, you did it again! A big thank you to the PatientsLikeMe community for helping us reach our #24DaysofGiving goal for the second year in a row. Together, you donated 476,243 health data points!  We’ll be making a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children. The final numbers? Check them out: 28,998 treatment reports 117,948 symptom reports 122,249 health outcomes To show our appreciation for all that you’ve done, we wanted to do something special in return. We made a video featuring some PatientsLikeMe staff talking about why your data donation matters. You’ll hear from co-founders Ben and Jamie Heywood, CEO Martin Coulter and team members from all parts of PatientsLikeMe. From all of us at PatientsLikeMe, thank you for re-thinking what it means to give this holiday season. Data for you. For others. For good. Share this post on Twitter and help spread the word.

Hacking our way to new and better treatments with integrated biology

When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments for patients today. We need to ask what are the best ways to generate actionable evidence that can benefit patients, clinicians, payers and regulators. We need to take an integrated approach to biology and treatment discovery. Large-scale approaches like genetics, the biome, metabolomics, and proteomics are coming down in price faster than the famous Moors law that has driven computer improvements. These tools are beginning to allow us to understand the biological variation that makes up each of us. This is the technology I used at ALS TDI; the organization I founded, to help learn about the early changes in ALS. This emerging technology needs to be met with well-measured human outcomes. PatientsLikeMe is working to build that network. Our goal is to be a virtual global registry with millions of individuals sharing health information, translated into every language and normalized to local traditions fully …

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The Theory of Everything

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon. “The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease. The movie premieres on November 7th in the U.S. – check out the trailer below.   As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led …

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Jamie delivers keynote presentation at DIA 2014

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!). During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said. Share this post on Twitter and help spread the word.

Throwback Thursday: Jamie talks about the future of medicine

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below: Share this post on twitter and help spread the word for good.

PatientsLikeMe (mid-year) news report

  We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights: In the news Innovators in Health Data Series: No Data About Us Without Us (Health Data Consortium) 10 Lessons From Empowered Patients (US News) PatientsLikeMe Offers Three Services for Pharma and Researchers (Applied Clinical Trials) Speaking the Patient’s Language (Hospitals & Health Networks) Straight talk with…Jamie Heywood (nature.com) Social Media Site Connects Patients Suffering From Similar Illnesses (KPBS) A listening cure: PatientsLikeMe gives patients voice in clinical trial design (TED Fellows) For more PatientsLikeMe media coverage, visit our Newsroom.

Genentech and PatientsLikeMe enter patient-centric research collaboration

Companies Sign Multi-Year Services and Data Subscription Agreement With Initial Focus on Oncology CAMBRIDGE, Mass. — April 7, 2014 — PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world experience with disease and treatment. The agreement is the first broad research collaboration between PatientsLikeMe and a pharmaceutical company and provides PatientsLikeMe the opportunity to expand its patient network in oncology. “We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.” “At Genentech, we come to work every day with the goal of transforming patients’ lives. The collaboration with PatientsLikeMe will allow us to learn more from patients with serious diseases, and better integrate their insights into our decision-making,” said Bruce Cooper, M.D. senior vice president, Medical Affairs, …

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PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine. “This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research. In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – …

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A Live Online Event: The extended effects of sleep deprivation

Recently, PatientsLikeMe co-founder Jamie Heywood and the member community were featured on TEDMED’s blog, and we’re happy to share the post with you this morning. In case you didn’t know, TEDMED is a “multi-disciplinary community of innovators and leaders who share a common determination to create a better future in health and medicine.” (Check out their website here.) Coming up this Thursday, Jamie is going to be part of a live online conversation, talking about chronic illness and it’s impact on sleep. It’s a free event that anyone can join, so we hope to see you there. Here’s what’s featured on TEDMED’s blog: The more we know about the physiological effects of sleep deprivation, the less we seem to know about its prevalence, diagnosis and effects on our well being. The online network PatientsLikeMe recently conducted a survey of more than 5,200 members — people with life-changing health conditions — about sleep, which revealed that most respondents think they have a sleep problem, and have suffered for a year or more. In fact, a quarter of those said that they rarely get a good night’s sleep. Yet only a small percentage had actually been diagnosed with insomnia. The effects of sleep deprivation, meanwhile, …

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