Why I'm Glad #GivingTuesday Is A Thing

Thanksgiving is my favorite holiday. Every year, 30-40 of my relatives cram into my parents’ house for a few hours to give thanks and celebrate as a family. It’s complete chaos. My now-husband, an only child, looked so overwhelmed the first time he attended that I thought he might never come back. My parents were high-school sweethearts so it’s both sides of our family together. My mom is in charge of turkeys and pies and everyone else is required to bring something. Usually, four separate tables are set throughout various rooms of the house and my mom always pulls out the good china, no paper plates.  The macaroni and cheese recipe has outlived my grandmother but it still involves 2 pounds of Velveeta. We’ve been through generations: having the majority of attendees over 70 and later having toddlers outnumbering adults. There’s been joy, grief, arguing, family scandals, a lot of football games, and so many opportunities to give thanks without all the focus on gifts like other holidays. I have so much appreciation for having a family that shows up through thick and thin. For better or for worse, they will be packed in on top of each other for a few hours to celebrate together and just be thankful.

I used to marvel about how my one cousin, after this evening mixed with gratitude and craziness, would get up with her best friend to shop at 4AM. I know it was their bonding time but here was an unbelievably non-materialistic, giving woman going out and fighting the other shoppers in the early-morning Black Friday commercial madness. It always seemed strange. And then, it got worse. Another cousin, who had worked at a large craft store for years, had to leave dinner early to go to work. Black Friday and the shopping mayhem wasn’t just on Friday anymore.  It had moved to Thursday.  The family day. The day of thanks.  I was horrified.  This got worse over the years. I just checked and this year that particular store is opening at 4pm, which is when our Thanksgiving dinner starts. The big sales are wrecking the family time and the spirit of the day. I can’t stand it.

So I’m extremely thankful for the 92^nd Street Y who started #GivingTuesday in 2012. As a friend of mine would say, “That’s a thing, right?” Yes, it is. Giving Tuesday comes after Black Friday and Cyber Monday and is the global day of giving back. To me, it embodies what Thanksgiving should flow into…. Give thanks for your blessings and then pay it forward and help others. This year for Giving Tuesday, I encourage everyone to contribute to my favorite cause, SHARE For Cures, a nonprofit that I co-founded with a brilliant friend of mine (it was really his idea).  SHARE For Cures is going to make more cures possible for all types of diseases by allowing anyone to contribute their health data.  Learn more here.  But if you don’t give to SHARE For Cures, there are a lot of other great nonprofits out there too - I’ve worked for a few. Give to someone. Embrace the spirit of the season and make a difference. The important thing is that you share.

To learn more and give to SHARE For Cures: http://igg.me/at/sT8rWOxEQzM  

To join our #GivingTuesday Thunderclap movement: http://thndr.me/wxLRsv  

Check out our new video... SHARE For Everyone - SHARE For Cures

Everyday People Powering Research

Last week, I was at a meeting on how to determine the value of healthcare (a difficult topic) and heard a comment that the group’s deliverables should not be simply “patient-centered” but instead should be “patient-driven.”  This statement perfectly echoes the changing world of patient advocacy and patient engagement.  More emphasis is being placed on patients and their experiences and many people are looking at how to bring about this change in healthcare as well as bringing the patient into science and research.

In 2010, the Patient Centered Outcomes Research Institute (PCORI) was formed and started giving out large research grants--but only if you have a patient-centered project and team.  Since then, I have seen researchers pay a lot more attention to incorporating not only patient advocacy organizations but the patients themselves into designing and carrying out studies.  Increasingly, patients are being asked to comment both on specific research studies and on broader policy issues.  This trend towards patient engagement has become so sweeping that a new program called “The Science of Patient Input” was just announced in June by Faster Cures, an action tank determined to remove barriers to medical progress.  The concept of incorporating patients into research is here, and it’s here to stay.

But there’s still something missing.  Educated patients are moving the needle forward towards making the system patient-centric by giving feedback about their experiences and providing input on clinical trials, research studies, and proposed law-making.  But what about the rest of us?  What about me? Thankfully, I’m actually pretty healthy.  So what can I do? Or my brother, who’s in finance and doesn’t know anything about medicine, how can he drive research?

This is where SHARE For Cures comes in.  SHARE For Cures wants to change “patient-driven” to “people-driven.”  Anyone, everyone,  everyday people.  We want everyone to be able to choose to share their health data to move medical research forward.  Clinical trials tend to be on a small group of individuals that meet specific eligibility criteria; however, many researchers and drug developers are interested in effects on “real-world” people.  We are the real world people.  Whether sick or healthy, our health and wellness data can make a difference.    Check us out, follow us, and sign up to be an early adopter.  Learn how you can help power research.