5 posts tagged “days”

Data donations make wishes come true

Posted September 10th, 2015 by

Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Keith and Scarlett take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Read about their stories below:

Keith
When 17-year-old Keith was diagnosed with lymphoma, his life was forever changed. Instead of fishing and playing sports, like he used to before he got sick, he now spends time in hospitals, enduring uncomfortable treatments. Keith longed to take a break from doctor’s visits and have a carefree vacation with his family; he wished to tour the Hawaiian Islands with his family on a Norwegian Cruise.

The PatientsLikeMe community made this happen! Once aboard the cruise ship, the crystal clear waters mesmerized Keith, as they took him to the Hawaiian islands of Kahului, Hilo, Kona, and Nawiliwili. Each new island provided a new world to explore. Keith and his family enjoyed pristine beaches, volcano views, whale watching and deep sea fishing.

Keith’s trip renewed his strength and hope for the future. He told Make-A-Wish Massachusetts and Rhode Island, “if you think about all the people who are emotionally going through so much because of what you’re going through, you become stronger than you can ever imagine. It shows your loved ones that there’s nothing to worry about.”

Thank you for donating your data and helping to give Keith and his family a vacation of a lifetime.

Scarlett
Though diagnosed with a brain tumor, three-year-old Scarlett wished to visit the TradeWinds Island Resort in Florida to explore the sea and the surf like her cartoon friends in her favorite movie, “Finding Nemo.” Scarlett and her family began their trip with a limousine ride to the airport. Upon arriving in sunny Florida, Scarlett tossed off her shoes to wiggle her toes around in the sand. She swam or built sandcastles on every beach – there was plenty for her to discover both in and out of the water. She even got to ride a giant waterslide and tried eating alligator meat at dinner.

Scarlett smiled all week long and her family savored quality time together. She had a week of carefree childhood. Scarlett’s mom and dad really enjoyed reminders of their daughter’s adventurous spirit.

Scarlett’s mom, Michelle, wanted to share with the caregiving community a few tips on coping with a young child who has a serious illness. Here’s what she shared:

When we were going through Scarlett’s treatment, people said to us ‘I don’t think I could do it’ and I always said to them ‘When you have to do something, you find a way.’ What were we going to do? Lay in bed and pull the covers over our heads? I would say:

  1. Don’t be afraid to accept any help that is offered (or ask for help) and don’t think people can read your mind. If someone asked, “What can I do?” I asked for specific things like “come keep us company during infusion weekends in the hospital” or asked for clothes when I was so stressed out that I lost weight and clothes for Scarlett after her surgery when she couldn’t pull a shirt on over her head.
  2. For couples – let one person be the emotional support and the other be the physical support. My husband is a nurse so he took care of making sure she drank plenty of water and ate plenty of fiber. I made sure that we still went to the park and birthday parties and lived life as normally as possible.
  3. My husband’s advice – drink prune juice and lots of water. Believe it or not, we probably saved her kidneys by giving her syringes filled with water all day when she didn’t want to drink. We kept her regular by giving her prune juice every day. Simple but very important.

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2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


Join Garth Callaghan for 24 Days of Giving

Posted December 2nd, 2014 by

Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you.

Today is also known as Giving Tuesday – a day that celebrates generosity. We’re hoping that after you celebrate by giving a donation of time or money to your favorite non-profit, you’ll consider coming back to PatientsLikeMe to donate your data. For every piece of health data you share on PatientsLikeMe over the next 24 days, we’re going to donate up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Not a PatientsLikeMe member yet? Join the community and start donating your #dataforgood. Already a member? Head to your 3-stars page to make an update and data donation.

Leading the charge- Garth Callaghan (@NapkinNotesDad)

Some of you might know Garth as the Napkin Notes Dad. He’s been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. But he doesn’t dwell on that. Garth takes each day as a gift and has fulfilled a promise he made to write 826 napkin notes. Emma will have one waiting for her in every lunch until the day she graduates.

Garth’s personal legacy is his words, and on PatientsLikeMe, his medical legacy is his data. He’s sharing his experiences in the hopes that others can learn from his journey and help fight their own battles better.

“It certainly doesn’t help me to keep my symptoms or my side-effects secret. I feel that I owe other patients my experience. If I donate my data, if I share with an organization that can put it together and see a pattern … I’m helping all of the patients.”

We’ll keep everyone updated on the 24 Days of Giving drive, so keep an eye on our
PatientsLikeMe Twitter and Facebook. Want to share about the data you’ve donated with others on social? Use the hashtag, #24DaysofGiving.

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Posted November 16th, 2014 by

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People
to Donate Health Data Starting on Giving Tuesday

CAMBRIDGE, Mass. (November 17, 2014) – On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday.

The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.”

At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. The data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need.

Garth Callaghan, kidney cancer fighter and author of Napkin Notes, understands the importance of data for good in furthering clinical research and is an active PatientsLikeMe member. Garth has been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. Rather than dwell on his diagnosis, Garth takes each day as a gift and a chance to connect with those he loves. He has fulfilled a promise he made to write 826 napkin notes so that Emma will have one for every day until she graduates high school. Garth uses PatientsLikeMe to share his data in the hope that others living with cancer can learn from his experience and help fight their own battles better.

“I keep my promise to Emma by sharing wisdom through my napkin notes, and I share my cancer stories online through PatientsLikeMe,” said Garth. “When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.”

The “24 Days of Giving” campaign will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves 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. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contacts
Margot Carlson Delogne
PatientsLikeMe
(781) 492-1039
mcdelogne@patientslikeme.com

Rachel St. Martin
Edelman
(646) 221-6933
Rachel.St.Martin@edelman.com