Today, we shine a light on Diffuse Intrinsic Pontine Glioma (DIPG)—a rare, aggressive brain tumor most common in children. We’re honoured to sit down with Alison Fiorini, who shares the story behind Jordana’s Rainbows, a charity inspired by the vibrant legacy of her daughter, Jordana, diagnosed with DIPG at a young age. What began as a tribute has grown into a movement of hope, awareness, and compassion for families facing the unimaginable. Alison speaks to the power of turning grief into action—and how even the smallest acts of kindness can spark lasting change.
Jordana’s Rainbows has become a beautiful tribute to Jordana’s spirit. Can you share the journey of how the foundation came to life and how it has grown over time?
Thank you; it truly has. I started the Jordana’s Rainbows Foundation a few months after Jordi passed away. While Jordi was in the hospital, she had wanted to create something called the Rainbow Chronicles, a way for us to share how children with cancer could remain strong, spread kindness, and be courageous. We started doing little random acts of kindness and paying it forward in our community, whether smiling at a stranger or paying the bill of the next person in line at the drive-thru. Jordi believed that putting a smile on other people’s faces was the definition of kindness. To honour her, we created the @jordanasrainbows Instagram page to document our grief journey, spread awareness for Diffuse Intrinsic Pontine Glioma (DIPG), and raise vital funds to support research at SickKids Hospital. Because DIPG is a rare and terminal pediatric brain cancer, it was challenging to find information on it during Jordi’s diagnosis. In creating our Instagram page, we became a resource for friends, families, and children facing DIPG, and built such a wonderful community filled with hope.
Photo provided by Alison Fiorini
Jordana’s memory continues to shine so brightly. What are some of the most meaningful milestones Jordana’s Rainbows has reached in advancing DIPG research and awareness?
In 2023, researchers and physicians at Sunnybrook and SickKids Hospital underwent a joint clinical trial that successfully delivered chemotherapy to pediatric brain tumours using an ultrasound. This significant breakthrough marked a world first. Since DIPG tumours are located in a critical part of the brainstem, they are inoperable. With this focused ultrasound technology and its non-invasive approach, chemotherapy can be more effectively delivered to the tumour.
We’ve also supported The Dirks Lab at SickKids by donating Jordana’s tumour to research. The Dirks Lab is tirelessly working to understand the link between stem cell biology, development, and brain tumour growth. With the help of our foundation and other philanthropic investments, The Dirks Lab has established Canada’s first-ever DIPG clinical trials, bringing hope of new therapeutic opportunities to children facing this terrible disease.
For families facing the unimaginable reality of a DIPG diagnosis, what message of hope or guidance would you offer as a beacon of light?
The grief journey is unique to every individual. I wish there were a universal message that would make a diagnosis better, but there isn’t. I believe all you can do is lean into it, learn as much as you can about the disease, find a support community, and, most importantly, turn your pain into purpose. After all, that’s why we started Jordana’s Rainbows.
Photo provided by Alison Fiorini
The bracelet collaboration with Jennifer Reed Designs is such a meaningful way to support the cause. How did this partnership come about, and how have collaborations like this helped drive impact for DIPG research at SickKids?
I am a jewelry lover. When I learned about Jennifer Reed Designs, I instantly fell in love with her hand-crafted pieces and believed this collaboration was written in the stars. It’s no coincidence that we share the initials “JR.” Created in honour of Jordi, The Jordana’s Rainbows bracelet has 22 rainbow-coloured Japanese seed beads representing her angel number. I wear it every day. With such a beautiful piece adorning your wrist, it acts as a conversation starter. Whenever I’m asked about it, I get to tell Jordi’s story and spread awareness for DIPG. Collaborations like this start the conversation and, most importantly, help The Jordana’s Rainbows Foundation raise funds directly donated to DIPG research at SickKids Hospital.
Looking ahead, what exciting initiatives or projects does Jordana’s Rainbows have in store to continue making a difference?
2025 is our year! This year, we’ve honed our initiatives to ensure they are as impactful as possible.
Last month, we launched Jordi’s Rainbow Connections, an initiative to inspire elementary school students to engage in small acts of kindness, creating a chain reaction of positivity in their community. Students were invited to perform a thoughtful gesture each day and record it on a growing chain displayed in their school. These chains, present at three schools across the GTA in our launch year, are a physical representation of the goodness children are capable of and a tribute to Jordi’s spirit of loving-kindness.
Looking ahead, we have a delicious collaboration in the works, as well as a charity fashion show, a special art unveiling, and more! Keep up with us on @jordanasrainbows to stay in the loop!
