14 posts from November, 2016

Ryan and Emma’s stories: Make-A-Wish® Massachusetts and Rhode Island

Posted November 30th, 2016 by

Last December, patients like you came together to donate more than 476,000 health data points, including nearly 30,000 treatment reports and close to 120,000 symptom reports. The data that everyone selflessly donated has a heartbeat that will keep on giving – helping other patients like you and accelerating research.

And because you helped us reach our goal, your data also made wishes come true for two children with life-changing medical conditions. On your behalf, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Ryan and Emma take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Check out their stories:

Ryan’s Island Adventure

Thirteen-year-old Ryan loves warm weather, swimming and being at the beach. After being diagnosed with a gastrointestional stromal tumor, surgeries and treatment kept Ryan away from seeing his friends and playing his two favorite sports – basketball and baseball. Ryan daydreamed about leaving his worries behind and going on an island adventure. When he learned that his wish would be granted, more than anything, Ryan wanted to take a family vacation to Beaches Resort in Turks & Caicos!

From the moment he landed, Ryan couldn’t wait to explore the tropical island. He was greeted with the most spectacular views of palm trees and white sand beaches. Ryan and his family explored the villages that made up the resort – each themed after Italy, France, and of course, the Caribbean. His days were filled with waterslides, sun, relaxation, and a break from the everyday stress that had begun to define his daily life.

Being given the opportunity to travel was a perfect escape from doctor’s appointments and medical treatments and Ryan felt a new sense of hope upon his return home.

Emma Visits Hawaii

Eight-year-old Emma’s passion for the sea helped her through months of treatment for acute lymphoblastic leukemia, as she imagined beachside adventures outside of the hospital walls. Emma wished to go to “paradise” with a trip to Hawaii!

Upon arrival on the island, Emma headed straight to the azure water and warm sands. The adventurous girl spent her days swimming, snorkeling, surfing and sailing. Surfing was her favorite, and she “totally rocked” at it, standing up on the board on her first attempt! On land, Emma loved experiencing the color, tastes and spectacle of a traditional luau. The incredible scenery made the hospital feel like a distant memory.

Emma’s visit to Hawaii marked the beginning of a new chapter for her and her family. Together they celebrated the end of her treatment and now look forward to a bright future.

 

 

 

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PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. 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. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375