68 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, and ABC News was there to cover their journey.

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 .

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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.