The Unravel Project
by Alia Merla
A note from Alia: Because of the nature of this story, I’ve taken the unusual step of adding my byline to this post. This is in no way intended to diminish the role of the rest of the DCA team in this project or this article.
Both as a team and as individuals, DCAers have always been engaged in giving back to our communities. We all volunteer with and/or donate to a variety of different organizations focused on everything from ocean conservation to food distribution to civil rights. At the end of each calendar year, Tyler coordinates a set of donations to our favorite charities. What was missing was a way for us as a group to have a larger impact than we could with our financial support. And the best way for us to do that was to use our collective skill set: video production.
Unravel
I’ve been involved with Unravel Pediatric Cancer from its beginnings in 2014. My friend Libby and her husband Tony founded it after their six-year-old daughter Jennifer received a diagnosis of diffuse intrinsic pontine glioma (DIPG)-- which is, even now, nearly universally fatal within a year after diagnosis. (Jennifer lived for three and a half months.) Later they– and I– learned just how dire the funding situation is for research into cancers that specifically affect children, and in particular for the lab-based innovations that are the foundation of future clinical trials.
Jennifer Lynn Kranz
2008-2014
Forever 6
So Libby and Tony and their friends and family (including me) decided to try to do something about it. Unravel has been raising both funds and awareness ever since, and has been very successful– raising over ten million dollars in the last ten years. The funds are distributed to researchers chosen and vetted by a scientific advisory committee made up of well-respected scientists in the field– and me, as chair/facilitator. The funds are given as an unrestricted gift: unlike with traditional grant funding, the research group can explore a new idea that comes up or move the funds to a different project when one isn’t working. Unravel only asks for an update about how things are going roughly once a year, and to engage with donors at fundraising events when possible.
Most gifts that Unravel is able to give are fairly modest by laboratory budget standards, but they have been very helpful for things like seed money to get new projects up and running; often enabling the proof-of-concept data required to get a larger grant from a more traditional funding agency.
DCA and Unravel
In a wonderful case of being in the right place at the right time, Unravel happened to be thinking of updating their promotional video right when DCA was thinking of leveraging our skill set to give back– and a partnership was born.
We started work on their video by interviewing Tony and Libby in their home. While I had heard Jennifer’s story before– and indeed, watched it unfold in real time– it was an emotional experience for us all.
Interview day
A bit later, we interviewed one of Unravel’s early funding recipients, and Joseph interviewed me to get my perspective as the chair of the scientific advisory committee. We’ve also been gathering footage at Unravel events, and planning more interviews with Unravel volunteers, board members, funding recipients, and more.
The current version of the video was shown at the 2023 Glitter Gala (the biggest Unravel fundraising event of the year) and will be used in many other settings as well. You can check it out below.
As we continue to interview more people and get more footage, we’ll be able to put together alternative edits focused on specific topics including the funding situation, new and promising areas of study, the effect of a diagnosis on a family and community, etc.
I will end on a personal note: this project is particularly meaningful for me. Jennifer Kranz was both my friend’s child and my child’s friend.
Jennifer and my son at a theme park when she was four and he was three.
This also wasn’t my first experience with pediatric cancer– my younger sister battled leukemia (ALL) and lost.
Jodi
1977-1994
Forever 16
They– and all other kids with cancer– deserve more effective, less toxic treatments. Unravel’s goal is to help make that happen, and we’re so thankful that DCA can contribute to the cause.
To get involved with Unravel, go to their website.