Help Harper make history

Harper, our incredible 8-year-old from Dartmouth, Nova Scotia, is embarking on a life-changing journey. She has been chosen as the third patient globally to receive groundbreaking gene replacement therapy for CTNNB1 Syndrome. Join us in supporting Harper's fight and help us raise the necessary funds for her treatment!

Understanding CTNNB1 Syndrome and gene therapy

CTNNB1 Syndrome is a rare genetic disorder affecting Harper and approximately 500 (known) others like her. This innovative gene replacement therapy offers a beacon of hope for a brighter future. Discover more about this condition and the pioneering clinical trial Harper is part of.

How you can help

Every contribution, big or small, makes a significant difference in Harper's journey. Explore the many ways you can support her treatment and help us reach our fundraising goals - not only for Harper, but for the kids who are also waiting in line.

GoFundMe campaign

For convenience, our primary fundraising platform for Harper's is GoFundMe. Your direct donations are crucial & will go toward her treatment and post-operative care. 

Other fundraisers

We have a variety of ongoing events and initiatives designed to raise funds for Harper. Learn how you can participate or contribute.

Follow Harper's journey

Stay connected with Harper's progress, milestones, and daily adventures on her Instagram page. Your encouragement means the world.

Learn about CTNNB1

What is CTNNB1 anyway?  Educate yourself about CTNNB1 Syndrome and the gene therapy trial. Understanding is the first step towards advocacy.

About Harper and her incredible fight

Harper is a vibrant 8-year-old with a spirit that shines brightly despite her diagnosis. Her bravery inspires us daily. This gene therapy is a chance to give her the best possible future. Discover her story, her challenges, and her hopes.

Latest updates on Harper's journey

Keep up to date with Harper's progress, fundraising achievements, and key developments in her gene therapy treatment. We share exciting news and important information regularly.

Hello

"We are truly grateful for everyone's support.  It is a miracle that we have this opportunity - we will move mountains to ensure Harper has a chance for a brighter future.  Like all parents, we only want our children to thrive.  Knowing there is something available that can help her, and ignoring it would make us negligent.  We know she has so much to give this world and we can't wait to see her shine"

Tara, Scott & David

Harper's mom, dad & brother

"Seeing Harper become the next child selected for this trial is both exciting and deeply personal for me. Having watched my own son receive this therapy, I understand the emotions that come with this moment, and I am grateful that another family has been given this opportunity. Harper has so much potential within her, and I can't wait to see what she may achieve in the years ahead."

Špela Miroševič, PhD 

Founding President CTNNB1 Foundation

"Harper is so special, and I am so inspired by her resiliency, determination, and especially her contagious joy. It is absolutely amazing that she is getting this opportunity, not only for herself and her family, but also for future little "Harpers" around the world who will benefit from this research. I can't wait to see how this trial will help her to reach even more milestones, and continue to spread her joy!"

Jenny Roy, BKin, MScPT 

Harper's physiotherapist

Connect with us

Our hometown 💜

Cole Harbour, Nova Scotia, Canada