Created the first-ever global patient registry with patient information for clinical-trial readiness.
Presently 550 children have been diagnosed – Estimated to be 500,000+ based on prevalence rates.
Galvanized and inspired a global network of renowned researchers, enlightened doctors and credible medical centers. Funded top research investigators focused on the most promising outcomes and breakthrough treatments.
Designed systems to promote Open Science, accelerate knowledge transfer; and incentivize collaboration—all core to our value system.
Facilitated international conferences, monthly roundtables and Share What Works programs with scientific researchers and medical clinicians. This has allowed families to understand symptoms and prognosis for better care and invaluable coping information.
Creating standards of care for treating 8p (largely unknown about by physicians and healthcare providers) by way of funding a Neurogenetic Multidisciplinary Clinic at Children’s Hospital of Colorado to serve as the model for a Center of Excellence.
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.
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.
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.
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!
8p Parent
8p Parent
The 8p community means a lot to us. When I need some answers, I turn to the 8p family.
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.
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.
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!
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.
8p Parent
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.
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.
8p Parent
