Our Story

Learn more about
Rare Trait Hope Society

Rare Trait Hope Society was born from a need to save children who suffer from ultra-rare, fatal diseases. It was founded by love.

Our founder Barbara Insley tells her story:

“In 2008, in an orphanage in Addis Ababa, Ethiopia, my perfect six-month-old daughter Makeda was placed in my arms.  I remember whispering to her that our life together would be a most amazing journey.  I knew that she would move mountains.  But by the time she was three, I could tell something wasn’t quite right.  She couldn’t keep up with the other kids or do the same things. 

After an MRI in 2012, it was clear Makeda didn’t have a case of developmental delay.  We started genetic testing.  After many false starts, in 2018, we found an answer.  My sweet girl had Aspartylglucosaminuria, (AGU). It’s a rare, fatal, genetic neuro-degenerative disease.  Worse, there were no treatments and no cure, and her life would be cut short”.

Like any parent whose child was faced with a severe disease, Barb took action. She founded the Rare Trait Hope Society in Vancouver, Canada, in 2020.

“I grieved because I could not accept this outcome for my daughter. To have fate match me with a child halfway around the world only to have her taken from me was devastating. I researched, and I reached out.  To medical professionals, to other parents and the public to help.”

Rare Trait Hope Society’s mission is to raise funds to help children suffering from ultra-rare, fatal diseases. This includes AGU, a rare neuro-degenerative disease that affects only about 150 children worldwide.


Kids with AGU around the world

Barb discovered a US nonprofit, the Rare Trait Hope Fund, dedicated to finding a cure for AGU. Julia is the mother of two boys in Louisiana, both with AGU. Her life mission is to save both of her boys. And Rare Trait is partnering with other parents: Stephanie and her daughter Hermance in France. Neeraj and Vandana, and their daughter Trisha in Australia. Greg and his daughter Sydney in Missouri. Jessica and Erik and their son George in California. And Jesus and Maria and their son Jordan in Spain.

These dedicated parents have come together to save their children’s lives. And they need the support of caring people to make it possible.

Together the parents have a goal to raise $2 million USD. This will fund the preparation and implementation of an upcoming gene therapy clinical trial.  The Canadian portion of that goal is $500,000.

AGU is a simple, well-understood disease.

But it lacks only one thing – a Cure!

This small group of kids have an illness so rare that it’s almost impossible to attract the necessary funding from investors or donors.


Will you join this fight
for our children’s lives?

Your donation will be meaningful and make a difference. You will help to save countless kids lives around the world.

Please, support children with rare diseases and the parents who love them deeply. Canadians can click here to donate right now.

Or internationally go to:

The Rare Trait Hope Fund, a 501(c)(3) registered charity in the United States. You can donate at www.raretrait.com.

Dona Esperanza, which is coordinating with Fundacion Columbus, a registered non-profit organization in Spain.

Please help us reach out to other donors by posting our website on your Facebook page, Instagram, or Twitter account. Together, we can cure AGU and other ultra-rare diseases!