News

Three moms move mountains to help kids with rare disorders

Their patient-led consortium is creating a free and open database for

Reelin groovy

Chromosome diseases disrupt many genes at once, but some genes matter more than others. 8p iPSC-derived neurons and brain organoids converge on a candidate driver gene located on chromosome 7: Reelin.

Project 8p Research Newsletter – May 2023

This month we tried something different at the Research Roundtable. Instead of having one or two researchers present their work, we posed several research questions to the group and then opened the floor for discussion.

Project 8p Research Newsletter – April 2023

What happens when preliminary data from two independent model systems line up? Is it case closed, or just the beginning of a careful iterative process to determine which results are real and which results are not, i.e, false positives?

Project 8p Research Newsletter – March 2023

The Project 8p Two Year Research Plan, first published last year, will undergo regular reevaluation and revision as our research projects provide new insights into the disease, as technological advances are made, and as the wants and needs of 8p heroes and their caregivers evolve.

Project 8p Research Newsletter

Welcome to the Project 8p Research Newsletter! 8p research is on the move in 2023. Last year we assembled a mission-driven team of researchers and clinicians focused on different segments of the Two-Year Research Plan, as explained below.

THE JOURNEY BEYOND A DIAGNOSIS

My baby’s new prognosis: ‘She will not die’… but what will her life be like and how should I live…

COLUMBIA LACROSSE SIGNS 8P HERO KARINA SHAH THROUGH TEAM IMPACT

Team IMPACT is a national non-profit organization, has developed a unique multi-year program that matches children facing serious illnesses and…
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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.