Meet The Heroes

We are a group of over 550 8p heroes that live all over the world and come in different shapes and sizes.

Despite the differences, Chromosome 8p shares many similarities. We are all hard working individuals that average 1,500 hours of therapy a year and at least 1 doctor visit every month. Just like most people, we deserve to enjoy every opportunity that life has to offer. And like superheroes always do, we seek victory as we try to conquer our daily challenges and end our day with a smile as we find the joy in knowing we are not alone. Project 8p is committed to bringing us together because we need each other!

She believed she could and so she did.

— Anonymous marvel of gene expression

Why are Chromosome Disorders Important?

Approximately 35% of birth defects are caused by chromosomal imbalance and copy number variation.

That’s 1.3 million newborns affected each year.

This figure is from a textbook chapter for Developmental Genetics in the Thompson and Thompson Genetics and Medicine 9th edition.

Emma Rose, OH

Tyson, CA

Malachi, TX

Alex, MD

Ella, NY

Milo, MD

Tristan, NY

Nate, VA

Benjamin

United Kingdom

I Wish

To be able to find a mode of communication as I'm nonverbal

Brianna

Canada

I Wish

To have a good life, to learn and play as everyone else

Lucas

United Kingdom

I Wish

To meet some 8p friends

Colton

USA

I Wish

I had a way to communicate, could keep up with my brother, and had more confidence in walking

Everleigh

United States

I Wish

To continue touching the many lives I come in contact with

Karina

United States

I Wish

To spread unconditional love and play my part to inspire healing

Henry

United States

I Wish

People would recognize what I can do and believe I can continue to learn

Theo

USA

I Wish

I could be understood by everyone and play basketball with my friends

Read about our 8p Heroes' Wishes in our collection of Wish Books

Also available in print upon request

Testimonials

The best part of the conference for me was connecting with other families in person. We have supported each other from afar through Facebook, but to see each other in person was emotional and uplifting.

Maricarmen Luhrsen

8p Mother

Attending the 8p conference was a life changer for us. Meeting fellow families felt like we found our extended family. I left the conference better educated and feeling empowered for our 8p hero’s growth. I can’t wait for the 2021 conference and seeing our 8p family again.

Amber Howland

8p Mother

It is amazing how you can meet a complete stranger, and yet, connect with them on such a personal level. I left the conference truly inspired by all the wonderful families we had met. I wanted to do more and contribute to this empowering community of individuals. 

Kaiti Syversyon

8p Mother

Project 8p Conferences are a vital link to the global 8p community. Connecting with fellow 8p Heroes feels like a family reunion, fostering an intimate bond. The conferences feature insightful speakers sharing cutting-edge research. Each event leaves me more educated and confident in supporting my 8p Hero, Lachlan, on his life journey!

Bradley Swail

8p Parent

Our family is extremely grateful for the growing 8p community..sharing and learning from similar experiences and challenges has really helped us in our own journey.

Rozalyn Gould

8p Parent

The 8p community means a lot to us. When I need some answers, I turn to the 8p family.

Jodie Young

8p Parent

Being part of the 8p community lets me know I am not alone that has to get over these obstacles. By sharing with each other, we can all help each other.

Dominique

8p Parent

It has been so comforting to find connection with families walking the same path. Getting a rare diagnosis feels so isolating, and you have to adapt to completely new expectations for your life. While all our kids are different, it’s such a unique connection of walking into this unexpected and unknown life together.

Mary VanMeter

8p Parent

Being a part of this Lil community means a lot! We learn so much, and we get to vent to other parents, we get to watch all of our children pass up these milestones that we didn’t think could happen. I love my 8p Family!

Sara Moreno

8p Parent

I’m stepping for the community. Virtually linking arms with the family, friends, and caregivers from around the world who understand. It reminds me that we are all not alone. We’re stepping together for our 8p heroes.

Talena VanSword

8p Parent

Project 8p is about pushing past limits: first, our precious grandson Ben, working through his exercises, always ending with a big smile; next his parents, Emma and Matt, gently but ferociously determined to help Ben be all he can be; and of course the teams of therapists, doctors and scientists, all working so hard to make progress. We won’t stop at 8,000 steps. As everyone is pushing their limits, we’ll push ours.

Kathy “Grammar” West

8p Grandparent

At age 4, after many hours of therapy and a spinal surgery, my niece walked for the first time. At almost six, she has learned to get into a standing position without assistance. She is resilient, like her 8p hero friends, who work hard every single day. Their determination is why I will be taking 8,000 steps.

Shae Urban

8p Aunt

Our experience at Children’s Hospital Colorado was transformative for my family in two key areas: personalized, quality care for our 8p hero and meaningful research. The expert team tracked my son’s development and gathered data from multiple 8p individuals, offering hope for a better future—greater understanding, tailored support for my son’s growth, and innovative treatments.

Jen

8p Parent

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.