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
I Wish
Brianna
I Wish
Lucas
I Wish
Colton
I Wish
Everleigh
I Wish
Karina
I Wish
Henry
I Wish
Theo
I Wish
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
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
Kathy “Grammar” West
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
