Commission Milestones

Commission Milestones

DEC 10 2020

Initial working groups kickoff -75 KOLS participating​

<span data-metadata=""><span data-buffer="">JUL 7-9 2021

Moving Mountains SHARED Family Conference in Westminster, CO
-Dup15q, 8p, and Ring14 families and professionals represented.

Start of data collection into the Clinical Research Platform (powered by RARE-X)​​

<span data-buffer="">DEC 2020 - MAR 2021<span data-metadata="">

10+ bi-weekly WG meetings

  • Community Engagement
  • Animal Models
  • In Vitro Models
  • Genomics/Bioinformatics

<span data-buffer="">JUL 06 2021<span data-buffer="">

Moving Mountains Science Conference in
Westminster, CO
– 45 researchers (22 in-person and 23 virtual)

Writing session for the Roadmap
Interact with the families ​

<span data-metadata=""><span data-buffer="">Mar 03 2021

Virtual  Collective Impact Conference
 – Reporting out of working groups​

<span data-buffer="">JAN 2022<span data-metadata="">

Illumina Partnership Finalized​

<span data-buffer="">FUTURE<span data-buffer="">

We continue to collect data and biosamples and are preparing to write several grants and an another
paper.​

<span data-buffer="">JAN 2022<span data-buffer="">

Launched the Neurogenetic Multidisciplinary Clinic at Children’s Hospital of Colorado. 

Clinical Data entered in Clinical Research Data Platform.​

<span data-buffer="">AUG 2022<span data-buffer="">

Published paper in AJHG​

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.