Blog

Embracing the 8p Journey Blog

We welcome you to submit a message for the 8p community by contacting info@project8p.org with the subject “blog post.” Thank you.

RICHIE’S STORY

RICHIE’S STORY Richie’s story has so many moving parts. He has affected so many people and if you asked all of us close to him to write this, you would…

PROJECT 8p HOLIDAY GIFT GUIDE

If holiday shopping is on your mind, then we have a fabulous resource for you! I don’t know about you, but shopping for my 8p hero has sometimes stumped me…

HOW TO QUALIFY FOR SOCIAL SECURITY DISABILITY BENEFITS WITH AN 8P DISORDER

How To Qualify For Social Security Disability Benefits With An 8P Disorder Anyone who has worked in the past but develops medical problems that will make it impossible for them…

GROWING WITH THE GIFT OF SHARING

GROWING WITH THE GIFT OF SHARING Story sharing is such a valuable way to share common experiences, learn, and develop, and can also be a very cathartic way to…

PROJECT 8P IS A MEMBER OF COMBINEDBRAIN

Project 8p is a member of COMBINEDbrain a non-profit consortium of 25 patient-advocacy groups, each representing a different rare genetic neurodevelopmental disorder. COMBINEDBrain’s mission is to speed clinical trial readiness…

UNDERSTANDING TELEHEALTH SERVICES AS A PARENT OF SPECIAL NEEDS CHILDREN

When it comes to healthcare for our children, parents are on the front lines 24/7. Parents with special needs children are warriors. I am the mother of one of these…

TRAVEL TIPS FOR PARENTS WITH SPECIAL NEEDS

Travel can be a stressful experience. This can be especially true when traveling with a special needs child. My husband, two kids, and I are a military family; we live…

NATIONAL MUSIC MONTH: MUSIC THERAPY AND 8P HEROES

By: Brad Swail, 8p Father based in Austin, TX March is National Music Month in the United States, and what better way to celebrate than by providing a little insight…

GOOGLE DOODLE KIDS COMPETITION

My sister is 5 years old and she can’t walk or talk but she tries so hard to. She has different therapists that come home to help her and she…

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.