66 posts in the category “Media Coverage”

“Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story

Posted May 26th, 2017 by
The 2 Sides Project

Margot visiting the location where her father’s plane may have crashed in 1966. Photo courtesy Istrico Productions.

Margot Carlson Delogne is the Vice President of Communications at PatientsLikeMe. She is also the child of an American soldier lost at war.

This Memorial Day we wanted to show how she’s working on her own healing process, but also repairing some of the divide left in the aftermath of the Vietnam War. In December 2015, Margot, along with five other grown sons and daughters of American fathers who were lost in the war, travelled to Vietnam to confront the painful history of the parents they’d lost and to meet face-to-face with grown Vietnamese children who had also lost parents in the same war, but on the opposite side. The journey, named The 2 Sides Project, also allowed the group to visit the locations where each their fathers had fought and died, an experience that left Margot “changed forever.”

“My father’s plane went down 200-300 meters from a bunker that had been his target,” Margot says of her father, Air Force Captain John W. Carlson, who was shot down in December 1966. “We looked at online maps before we went and they showed an odd line of trees along the edge of a road, and exactly 200 meters from that, another set of trees that looked different from the rest…So we went to that area and got permission to walk toward the spot. One of the other American sons on the trip, Ron, watched his GPS and reported how close we were every few steps. He stopped me when his map said 200 meters and pointed in front of me. I looked and saw a crater. I asked Ron if its shape and size were natural and he said no, he didn’t think so. So, I walked into it and sat in the center. That’s where I held my father’s service. I read messages from my sister and my mother and played a favorite song of my father’s, Greensleeves. Margaret, a fellow airman’s daughter on the trip, helped me read the poem High Flight, by John Gillespie Magee, Jr. I climbed out of the crater and left, a little lighter than before.”

The 2 Sides Project

Margot sitting in the crater where she held her father’s service. Photo courtesy Istrico Productions.

In the same trip, Margot and the group also met with twenty Vietnamese sons and daughters who were children of parents lost fought in the war on the opposite side. Their meeting, according to Vietnamese officials, was the first formal one between children whose fathers died fighting on both sides of the war.

Mr. Xiem, 66, took part in one of the historic meetings, sharing with the group that his father had been killed by American bombs in 1965, and two years later his school was bombed by an American aircraft killing 33 students at 1 teacher. “When I was informed that I would meet with The 2 Sides Project and interact with children of U.S. soldiers killed in the Vietnam War, I began to think a lot,” Mr. Xiem said. “My feelings gradually changed from hatred and resentment to empathy and pity for the children of American soldiers killed in the Vietnam War. When I came to the meeting, I saw the lack of confidence, the anxiety on their faces…I witnessed their tears. And at that moment my hatred seemed to melt away, leaving only sympathy.”

The 2 Sides Project

Mr. Xiam wearing The 2 Sides Project pin, standing with Ron Reyes, an American son. Photo courtesy Istrico Productions.

The entire journey, which has been covered by the New York Times and the Washington Post, was documented in film by Anthony Istrico, Director and Founder of Istrico Productions, and premiered at the GI Film Festival last night. Three members of the Vietnamese group joined Margot and the five other American sons and daughters for the premiere – watch the trailer here. They also visited the Vietnamese Embassy and the Vietnam Veterans Memorial, along with a number of other cultural activities.

The 2 Sides Project

The American sons and daughters, from left to right: Margaret Von Lienen, Ron Reyes, Margot Carlson Delogne, Mike Burkett, Susan Mitchell-Mattera, Patty Loew.

When she presented the idea of the 2 Sides Project to the Vietnamese government, the official’s reaction amazed her. “He looked me in the eye and said ‘our countries have come together but our people have not, and I think your project will help. We will support you however we can.’ That’s when I knew this was going to become a reality.”

In her own way, Margot is working to mend the rift between the two countries the best way she knows how, communication. To read updates and stories about their journey, visit the 2 Sides Project website .

Share this post on Twitter and help spread the word.


PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases

Posted April 10th, 2017 by

CAMBRIDGE, Mass.–(BUSINESS WIRE)PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease.

Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage patients and caregivers at every stage of their journey. Through the creation of digitally-enabled research communities and tools, this multi-year collaboration will help those struggling with a rare disease to track and share their experience with others living with the same condition. It will also connect patient-generated health data with genotype and physiological data to enable research outcomes in order to help Shire better meet the specific needs of patients with rare diseases.

Philip Vickers, PhD, Head of Research and Development for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases. “Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. We typically study patients at a specific point in time in a clinical setting that may be far from home. Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform. Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”

PatientsLikeMe Co-founder and President Ben Heywood said the collaboration will give patients and caregivers new ways to understand their symptoms, treatment impacts and quality of life over time, and new insights into how to improve their outcomes. It will also help both companies advance research for a deeper and more collaborative understanding of health and disease.

“From my own family’s experience, I know that having a rare disease can be incredibly isolating. But as we’ve seen with other conditions, patients and caregivers who connect on our platform have unprecedented control and influence over their experience, and potentially their outcomes,” Heywood said. “Our work with Shire will give patients, caregivers and researchers access to new forms of data that can improve our understanding of the human condition, and help Shire align their operations behind patient-driven directives. We applaud that effort and are delighted to help drive it.”

Karl Hick, CIO for Shire, said that “digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs. The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Shire
Shire is the leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions. We strive to develop best-in-class products, many of which are available in more than 100 countries, across core therapeutic areas including Hematology, Immunology, Neuroscience, Ophthalmics, Lysosomal Storage Disorders, Gastrointestinal/Internal Medicine/Endocrine and Hereditary Angioedema; and a growing franchise in Oncology.

Our employees come to work every day with a shared mission: to develop and deliver breakthrough therapies for the hundreds of millions of people in the world affected by rare diseases and other high-need conditions, and who lack effective therapies to live their lives to the fullest. More information at www.shire.com.


Loud and clear: The patient voice on the ACA

Posted March 2nd, 2017 by

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up.

A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective:

“Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.”

  • Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis

 

ACA patient poll by PatientsLikeMe

2,197 PatientsLikeMe members weighed in on the ACA.

 

“I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made ‘too much’ on unemployment which wasn’t much. This doesn’t take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can’t afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don’t have any savings; I can’t work. I am borrowing money from credit cards just to make ends meet.

And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others.”

  • Shawn, Lakewood, CO, living with severe traumatic brain injury

Thanks again to all who participated and helped elevate the patient point of view. Let’s keep the dialogue going, together.

Share this post on Twitter and help spread the word.


A Traumatic Brain Injury Can Happen to Anyone

Posted March 18th, 2013 by

Did you know that 1.7 million Americans sustain a traumatic brain injury each year?  Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function?

Brain Injury Awareness Month Banner

March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that traumatic brain injuries are a contributing factor in a third of all injury-related deaths in the US.  In addition, 3.1 million individuals are living with life-long disability as a result of a traumatic brain injury. Some common causes of these injuries are falls, car accidents, workplace accidents and assaults, but the effects can vary greatly from person to person.  No two brain injuries are alike.

Brain Injury Global Picnic Logo

Are you living with a traumatic brain injury?  Share your symptom and treatment histories with the 500+ members of PatientsLikeMe’s traumatic brain injury community and discuss your experiences in our Injuries and Traumas Forum.  In addition, consider raising awareness in your area by getting involved with the Brain Injury Global Picnic, which takes place September 21, 2013.  The goal is to organize 1,000 picnics around the world – thus setting the Guinness World Record for the most people picnicking in a 24-hour period – to promote awareness, education and change.


PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Posted March 13th, 2013 by

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement

CAMBRIDGE, Mass. —  — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials.

Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.

In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”


PatientsLikeMe in the News

Posted March 6th, 2013 by

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

Paul Wicks at TED2013

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.


Aetna and PatientsLikeMe Help Empower Members Through Collaborative Program

Posted February 14th, 2013 by

HARTFORD, Conn. and CAMBRIDGE, Mass., February 14, 2013 – Aetna (NYSE: AET) and PatientsLikeMe today announced a new program to help Aetna members improve the way they live with various health conditions. Through a one-year pilot program, Aetna is directing its members to PatientsLikeMe so they can connect with others who have the same condition, and access real-world symptom, treatment and outcome reports.

Aetna members can now receive information about PatientsLikeMe through Aetna Navigator®, Aetna’s secure member website, and access a customized PatientsLikeMe landing page. Aetna nurse case managers will also encourage members to use PatientsLikeMe to learn more about specific health conditions. Aetna is the first health insurance company to develop this type of integrated program with PatientsLikeMe.

“PatientsLikeMe is one of the most innovative and well-respected online patient resources. We share a common focus to empower people to make better health care decisions and lead healthier lives,” says Susan Kosman, R.N., Aetna’s chief nursing officer. “Some of the most useful information comes from the people who know firsthand what it’s like to live with a disease. Our collaboration will help us learn how Aetna members can benefit from real world information and patient-to-patient contact to make better, more informed health decisions.”

PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers adds, “Aetna’s focus to build a stronger, more effective health care system through collaboration with others makes Aetna a pioneer among payors and the perfect ally for PatientsLikeMe. Working together, we’ll connect members with information and resources to live better, so that patient experience continues to propel changes in our health care system.”

PatientsLikeMe connects more than 175,000 patients who are looking to share information on their health condition and learn from others who have similar experiences. Patients can create and share online health profiles that capture their disease experiences, including symptoms and treatments. This information helps create new insights into these diseases that can help advance medicine.

As part of the collaboration, PatientsLikeMe will share information, de-identified in accordance with HIPAA, with Aetna about how their members are using the website. Aetna plans to use this information to provide valuable services and tools to its members. Aetna will not share any Personal Health Information (PHI) or Personally Identifiable Information (PII) with PatientsLikeMe as part of this program.

About Aetna
Aetna is one of the nation’s leading diversified health care benefits companies, serving approximately 37.3 million people with information and resources to help them make better informed decisions about their health care. Aetna offers a broad range of traditional, voluntary and consumer-directed health insurance products and related services, including medical, pharmacy, dental, behavioral health, group life and disability plans, and medical management capabilities, Medicaid health care management services and health information technology services. Our customers include employer groups, individuals, college students, part-time and hourly workers, health plans, health care providers, governmental units, government-sponsored plans, labor groups and expatriates. For more information, see www.aetna.com.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


Give the Gift of Life on National Donor Day

Posted February 13th, 2013 by

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

  • 117,001 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.


PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge

Posted January 28th, 2013 by

“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.”
Jamie Heywood

While attending the 2012 INSEAD Healthcare Alumni Summit in London last fall, PatientsLikeMe Co-Founder and Chairman Jamie Heywood sat down with INSEAD Knowledge’s Editor-in-Chief Shellie Karabell to discuss PatientsLikeMe’s model and mission.  What role does Jamie see PatientsLikeMe playing in the healthcare system?  Why does he feel we are a social networking site only in the secondary sense?  How does privacy factor in to how we collect and share data?  Find out that and much more in this insightful interview and accompanying article.


Innovating Healthcare Through Shared Patient Knowledge

Posted December 12th, 2012 by

What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments?  Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Click on the box below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare.

The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo.

For other recent media highlights, visit our Press page.


PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

Posted December 3rd, 2012 by

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


Working Together for an AIDS-Free Generation

Posted November 30th, 2012 by

World AIDS Day Is Saturday, December 1, 2012

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”

More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment.

Facing AIDS Is an Ongoing AIDS.gov Social Media Campaign

Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself.

Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects.  From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.

The point is that working together can improve care – and increase prevention.  Join the millions of Americans working towards an AIDS-free generation today.


Honoring Family Caregivers Everywhere

Posted November 26th, 2012 by

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November Is National Family Caregivers Month

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

ALS patient Persevering’s CareTeam members (his wife and his sister, respectively) are displayed in the “About Me” section of his profile.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.


PatientsLikeMe’s Paul Wicks Is a TED2013 Fellow

Posted November 14th, 2012 by

PatientsLikeMe Research & Development Director Paul Wicks, PhD

We are thrilled to announce that PatientsLikeMe Research & Development Director Dr. Paul Wicks, PhD, has been named a TED2013 Fellow.  He is one of 20 individuals to be selected from more than 1,200 candidates to attend the TED2013 conference in Long Beach, California, participate in a preconference bootcamp and receive mentoring from the TED community.

If you’re not familiar with it, TED is a nonprofit devoted to Ideas Worth Spreading.  It started out as a conference designed to bring together people from Technology, Entertainment and Design (T-E-D) and has since evolved into a global movement for sharing big ideas.  In addition to annual conferences in the US and UK (TEDGlobal), which bring together movers and shakers for inspiring talks of 18 minutes or less, TED sponsors local events (TEDx) and shares many of its videotaped talks via TEDTalks and TEDxTalks. (Among them: a 2009 talk by PatientsLikeMe Co-Founder Jamie Heywood, a 2010 talk by Paul Wicks and a 2011 talk by PatientsLikeMe Co-Founder Ben Heywood.)

Click Here to Read About the 20 Individuals Selected as TED2013 Fellows

The theme for the TED2013 conference is “The Young. The Wise.  The Undiscovered.”  Accordingly, this year’s class of TED Fellows represents “young innovators from around the globe, all with insightful, bold ideas that have the potential to influence our world.”  Paul is a perfect fit for this mission, having already been named one of the best young innovators under the age of 35 by MIT’s Technology Review as well as their “Humanitarian of the Year” in 2011.  We know he won’t stay “undiscovered” for long!

A big thanks goes to TEDGlobal 2012 Fellow Max Little, who nominated Paul for this prestigious opportunity.  An applied mathematician who is currently a Postdoctoral Research Fellow at MIT, Max is working on a breakthrough technique to monitor – and potentially screen for – Parkinson’s disease through simple voice recordings.  Learn more about Max’s ingenious idea in his June 2012 TEDTalk below and stay tuned for more coverage of this trailblazing researcher in the coming weeks.