Earlier this month I visited the Broad Institute for the first time. I dug out a rarely-used pair of heels, rode the Red Line to Kendall and prepared to smile through a meet and greet. Attendees like me settled their nerves with a glass of wine or soft drink from the bar and tried to take cues from each other. Our hosts encouraged us to mingle. This was an event to bridge gaps between scientific minds and families, to gather up a variety of intellectual powers and band together for a cause our host described as “bittersweet”.
Two years ago, our neighbors lost their first born daughter Sajni to diffuse intrinsic pontine glioma (DIPG), a fatal brain cancer. While struggling through their grief, they threw themselves into pursuing doctors and researchers who might be able to crack this disease and bring hope to other children and their families. When the Broad Institute agreed to take on the challenge of investigating whether known FDA-approved drugs could have a role in arresting this disease process, our friend, Prabal Chakrabarti and his wife Vanessa were overwhelmed by the hint of promise. Prabal described it as “bittersweet… Bitter because it came too late for Sajni, but sweet because it’s going to help other children and other families.” (Quote from Boston Globe article “This Cambridge nonprofit is seeking every drug ever developed”. Click on this link to read the full article by Jonathan Saltzman.)
This summer we celebrate the fiftieth anniversary of Apollo 11 and man’s first steps on the moon. Neil Armstrong lost his daughter “Muffy” to DIPG in 1962. Was it his grief that spurred him on to greatness? It’s unclear. But I am similarly in awe of my friends who persevered to birth this research study at the Broad in order to bring hope to families, even if it is too late for their own.
Once all of the attendees were seated for a formal presentation, I listened to President and Founding Director Eric Lander reminisce about the time when he and his colleagues sat around dreaming of the day they would sequence the human genome. He proceeded to list other examples of how their hard work transformed ideas that seemed akin to science fiction into realities that improved lives. Following his introduction, I sat enthralled as Drs. Todd Golub and Mariella Filbin detailed their plan to take every single drug known to man and attack cell lines from biopsies of patients with DIPG in an unprecedented attempt to identify a treatment for this vicious, inoperable and incurable pediatric disease.
I wasn’t the only one inspired.
“How much money do you need?” An eager audience member called out.
“We’re looking at about $800,000 to complete this first phase,” Dr. Golub replied.
After pondering that for a few minutes another audience member raised a tentative hand,
“What can you do with $1.5?”
The entire room dreamed for a moment.
What could they do with $1.5 million?
These were the people who sequenced the human genome. These were the people who cared enough to see this project through. These were the people to support.
And why do this work?
Please, as my recommended reading to you this month, read Prabal’s article from the Ideas section of the Boston Globe, linked here: https://www.bostonglobe.com/…/p6RsaUEyBtzAppjDOU…/story.html).
Let your heart break with this family. Let your eyes cry tears of joy for the love they have found through their grief. Let your mind dream of what they might accomplish in the future.
Then, click this link (https://giving.broadinstitute.org/searching-treatments) to learn more about the project.
Think of what you can give. And double it. Click here (https://friends.broadinstitute.org/) and choose the designation “Sajni Chakrabarti Fund for DIPG Research.” Don’t let another fifty years pass without a cure.
Every bit helps. Be a part of the community with us.
Here you will find a catalog of my writing and reflections.