About NotJustYou

Canada’s Sickle Cell Support Organization.

NotJustYou creates support systems, tools and resources for individuals and families affected by sickle cell disease. Founded in Edmonton in 2019 by a survivor, we’ve grown into a national community.

Meet our founder Support our work

Mission

To be an easily accessible, broad support network that educates, motivates and celebrates individuals and families affected by sickle cell disease.

Our vision: to shine a celebratory light on the sickle cell journey, and to provide a sense of hope in the fight against this disease.

Educate

Knowledge that feels like a conversation, not a pamphlet. We make sickle cell information accessible, relatable and culturally resonant, so families can face it with confidence and compassion.

Motivate

Thriving beyond a diagnosis. Through connection and practical resources, we remind warriors and families that they’re capable, worthy and part of something bigger than themselves.

Celebrate

Celebration is advocacy. Joyful spaces that honour lived experience change how the world sees sickle cell: not as limitation, but as legacy.

Seven Years

From one concert to a national community

2019

NotJustYou launches with the Ruva N Friends worship concert, for more than 300 people.
Warrior Bags packed with the University of Alberta Black Students’ Association.

2020

A One Year Anniversary concert, after more than $5,000 raised in our first year.
Our first hospital gift, to the Stollery Children’s Hospital.

2021

Gifts and Warrior Bags for Alberta Children’s, BC Children’s and SickKids.

2023

Back in person after 38 months: the first Cellular, the first World Sickle Cell Day Brunch and The Kickback.

2024

Cellular goes to Toronto, our first event outside Edmonton.
The Kickback returns to open Sickle Cell Awareness Month.

2025

Cellular Calgary adds 28 people to the stem cell registry in one night.
Bright Boxes travel from British Columbia to Newfoundland and Labrador.
The 100 launches at The Kickback.

2026

The Afro-Jazz Experience celebrates our seventh year.
Our first Black History Month group blood donation, and Cellular in Vancouver.
CELLS.irl dinners in Edmonton, Calgary and Toronto.
The fourth and final World Sickle Cell Day Brunch (for now).

Our Founder

Ufuoma Muwhen, Founder and CEO

Diagnosed with sickle cell at two and cured by a stem cell transplant at eighteen, Ufuoma founded NotJustYou in 2019 so no warrior would feel alone. She holds a BSc in Biological Sciences and Psychology from the University of Alberta.

I was tired of settling in the grey area that lies between the patients and the less-than-perfect healthcare system, especially for patients with sickle cell disease. So I present to you NotJustYou, a place where we can build community around sickle cell.

Read Ufuoma’s story

Board of Directors

The people behind NotJustYou

A volunteer board of warriors, clinicians and professionals guides our work.

Oluwakanyinsola Bello

Board Chair

Zainab Giwa

Wellness Director

Dr. Adedamola Bello

Clinical Director

Read his Sickle Story

Faith Moses

Secretary

Bolakunmi Banjo

Treasurer

Partners

In good company

Sponsors, health partners, venues and creatives who make our programs and events possible.

Meet our partners

Community events sponsor since 2023

Vertex Pharmaceuticals

A global biotechnology company with a Canadian team in Toronto. Vertex has sponsored every World Sickle Cell Day Brunch since our first in 2023.

Blood and stem cell partner

Canadian Blood Services

Canada’s national blood operator outside Quebec, and home of the national stem cell registry. Our partner for every Cellular registry drive and group donation.