Project 8p Research Newsletter – Summer 2024

The last time 8p families and researchers gathered together to break bread over science and shared lived experience was at the Moving Mountains conference in Denver Colorado in the Summer of 2021, two years after Project 8p was launched by Bina Maniar. Project 8p was joined by two other foundations focused on a neurodevelopmental chromosomal disorder, Dup15q Alliance and Ring14 USA. 

In spite of the headwinds of the pandemic, which ground so many rare disease projects to a halt, Project 8p was successfully able to nucleate a small but passionate community thanks in measure to securing CZI’s Rare As One grant funding. Project 8p made the first seed investments in a tiny portfolio of sponsored projects. A few months after the Moving Mountains, Project 8p brought me on as Science Director and we were off to the races.

Three years later, I’m thrilled to report that the 8p community — expanding in number of families and researchers and dollars fundraised, and more organized than ever — returns to Denver to inaugurate the next exciting era in 8p research. If the preceding chapter could be encapsulated as going zero to one, this next phase will be defined by acceleration: follow-on investments in successfully seeded projects will be deployed alongside fresh investments in emerging research opportunities. Overarching scientific goals are to cement discoveries into drug candidates and initiate the first clinical studies.

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The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.