Awareness Week Recap
Rare Cancer Dependency Map Initiative at the Broad Institute of MIT and Harvard
Year One – Research Project Update

Together with the SDHB Pheo-Para Coalition and the Paradifference Foundation, the Pheo Para Alliance has funded a first-of-its-kind research effort at the Broad Institute of MIT and Harvard to lay the foundation for the creation of a pheochromocytoma and paraganglioma tumor dependency map. Launched in 2019, this three-year project aims to establish a fresh tissue acquisition pipeline for any patient, whether nationwide or across borders, to donate living tissue for the derivation of patient models, and develop a leading translational research platform focused on systematically identifying drug repurposing hypotheses and genetic dependencies of pheochromocytoma and paraganglioma tumors.

During the first year of this initiative, efforts focused on establishing and fine-tuning pipelines for fresh tissue acquisition from patients, submitting these tumor tissues for sequencing to confirm expected genomic characteristics, and devising an initiation strategy that might increase the likelihood of successful long-term cultures. 

Due to the Covid-19 pandemic, which forced the Broad Institute to temporarily close the majority of its lab operations (with the exception of work on Covid-19), tissue acquisition was paused from March through June. Lab operations resumed in early July and, since, the team has collected 4 fresh tissue samples, yielding a total of 13 Pheo/Para tumor samples from 13 different institutions from across the United States. Twelve of these samples were acquired through the online consent webportal Pattern.org. Excitingly, this now enables the launch of the next phase of the project’s laboratory work, as several samples were required in order to have a robust cohort for its pilot plans.

What pheo para symptoms do you/did you have?
This image was created by the 75+ patients who responded to this question. 100+ symptoms are included!
Newly Diagnosed Care Kits
We send care kits to newly diagnosed patients to let them know they aren't alone in their journey and to educate them on the illness. The care kits include goodies such as pheo para bracelets, stickers, and most importantly, educational information to help them navigate their illness. We like to think of it as a virtual hug from pheo para phriends. Please help us keep costs low by donating $20 to underwrite the cost of a care kit.
Mark Your Calendars!
Rare Cancer Awareness Day, 9/30
Monthly Online Support Hangout, 10/6 - Register here!
Pheo Para Calorie Challenge, 10/17-24 - Learn more here!
NET Cancer Day - 11/10 - Learn more here!
Giving Tuesday, 12/1