Ben Heywood

PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions

Patient Experiences / By

CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has been promoted to VP of Advocacy, Policy and Patient Safety. PatientsLikeMe Co-founder and President Ben Heywood says the appointments underscore the company’s “patients first” mission. “We’ve been committed to understanding and representing patient interests for years. With Kim and Sally in these roles, we’ll be in an even better position to keep patients at the forefront of all we do – from how we develop our website to how we represent patient interests at an industry and policy level.” Kim Goodwin In her role as VP of UX, Kim will evolve the information and structure on www.patientslikeme.com to help people live better lives with their conditions. She plans to expand member involvement in the website development process to improve usability and to make sure the website’s content answers their most important questions. She will also make it easier for members to find and connect with people …

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Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling

3 Comments / ALS / By

Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized ALS residence. When Steve Saling was diagnosed with ALS, a rapidly progressive neurodegenerative disease, in 2006, he immediately began to “secure a way to provide for care” as his condition advanced. His expertise as an architect, his keen interest in technology and his diagnosis all proved vital as he worked with Barry Berman, CEO of the Chelsea Jewish Foundation, to create the first-ever, fully automated ALS residence. This state-of-the-art residence soon became a reality and opened its doors in August 2010. Despite this tremendous accomplishment, Steve isn’t done yet. He has also created the ALS Residence Initiative in an “effort to duplicate the project nationwide.” The next facility to open will be in New Orleans. Steve greeted Ben and Jenna at the door and was excited to get the tour started. Unable to speak on his own, Steve communicates through a sight-based technology that can …

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PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI

ALS, Research / By

On Friday, November 2nd, several PatientsLikeMe team members donned their finest to attend the 2nd Annual White Coat Affair, a charity gala benefiting the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS, also known as Lou Gehrig’s disease. This gala fundraiser was held in conjunction with ALS TDI’s 8th Annual Leadership Summit, which included in-depth scientific presentations by top ALS researchers, a discussion panel with industry leaders and an awards ceremony honoring individuals who have made extraordinary contributions to ALS research and advocacy.  (View the summit webcast here.)  PatientsLikeMe was a proud sponsor of this annual gathering of the most influential minds in the ALS community.  In particular, we were honored to witness the posthumous awarding of the Stephen Heywood Patients Today Award – given annually to an individual who exemplifies what it means to be an educator, role model and advocate – to beloved PatientsLikeMe member Persevering (Rob Tison). Held at the Fairmont Copley Plaza in Boston the next night, A White Coat Affair was an opportunity for summit attendees to unwind and socialize via cocktails, a dinner program, live music and …

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Recognizing the Rare Disease Community’s Champions of Hope

2 Comments / Patient Experiences, Rare Diseases, Research / By

Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates. In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if …

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PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Patient Experiences, Research / By

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S. CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes. “A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.” According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States. “Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to …

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Behind Every Piece of Data Is a Patient

Patient Experiences, Research / By

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way. However, behind every piece of data is a patient. So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease …

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Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk

2 Comments / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive? One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal. Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

Holidays Wishes from PatientsLikeMe to You

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By

The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team. “I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder “I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director “I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development “My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer “All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder Happy …

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How to Thrive: Takeaways from TEDx Cambridge

1 Comment / Patient Experiences / By

Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process. Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel. For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up …

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A Little More About Us: A Look Back at the Founding of PatientsLikeMe

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept. Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease. You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.

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