NotJustYou is a Sickle Cell Support Organization that is devoted to creating support systems that provide tools and resources for individuals and families affected by sickle cell disease. We want to shed celebratory light on these individuals’ sickle cell journeys and provide a sense of hope in the battle.

Many individuals with sickle cell disease do not believe they can live full lives due to their condition, and are often discouraged from seeing any positive aspects of their disease. Our mission is to shed celebratory light on one’s sickle cell journey and provide a sense of hope for these individuals. Ultimately, this means that we want to affirm a universal message that one’s life can be more than the disease they live with, and, in fact, your experiences with sickle cell disease can provide you with a unique perspective which can lead to many positive outcomes for oneself and others, and, thus, can be celebrated. We also want to provide individuals with sickle cell with real-life examples of others who manage to live fulfilling lives despite their disease in order to show them that to live a life different from others is not a hindrance, but can actually drive positive change.

We want our organization to be an easily accessible, broad support network that educates, motivates, and celebrates individuals and families affected by sickle cell disease.

• We educate those affected by sickle cell with both medical information and first-hand accounts of others with sickle cell (primarily through our online platforms) that can help these individuals and families better understand the disease and the various forms of treatments available. We also educate those who may not be directly affected by sickle cell with information about genotype testing, ways to support those affected by sickle cell, and how to manage relationships with individuals that have sickle cell.

• We motivate those affected by sickle cell to still live a full life, regardless of their condition. At the moment, this is primarily done through motivational talks given by Ufuoma Muwhen on various online and physical platforms, and in direct conversations with individuals who have sickle cell but are having a difficult time figuring out how to still enjoy daily activities. We also hope that the sentiment from receiving a Warrior Bag from an organization that is specifically geared towards those with sickle cell, of which there are few, can encourage patients of the support that is available should they desire it.

• We celebrate those affected by sickle cell disease by publicly supporting success stories and their achievements and accomplishments through our website and social media platforms

We care a lot about putting these ideas to work in our surrounding community and committing ourselves to bringing people together in light of this cause. But, we also want NotJustYou to have as much of an impact internationally, as it does locally. We strive to bring these tools and resources as proximally close as possible to the areas that need it around the world.

Ultimately, we strive to support individuals and families dealing with sickle cell disease however we can. Sometimes that could mean just providing a “shoulder to lean on” (in the form of professional counselling or a connection with another sickle cell patient) when needed. However, we also aim to make investments with money, time, and non-monetary and social resources into the lives of these individuals and families with activities such as:

• Contributing to holistic care for sickle cell disease patients and families by providing spaces (online through social media, and physical with community events currently in Edmonton) for healthy discussion on the social and physical implications of the disease. We provide a voice to advocate to healthcare professionals and governing boards in hospitals and government, for sickle cell disease patients and families regarding various treatment options.

• We also seek to continually expand our online following to give different sickle cell disease patients and families a platform, through our sickle stories page and social media platforms, where they have the opportunity to engage with each other and support one another by interacting with content.

• We build relationships between sickle cell disease patients/families and doctors/caretakers, by introducing these patients and families to our network of experienced hematologists and medical researchers, who can not only provide appropriate treatment, but also foster the kind of long-term relationship with patients that is needed to deal with the lasting effects of the disease.

In our organization, we endeavour to promote health by providing individuals and families dealing with sickle cell disease with various forms of mental, emotional, and physical support to show them that they are not alone. We want individuals and families dealing with sickle cell anemia/disease to come to the complete understanding that sickle cell does not define you. Through this, we hope to encourage these individuals and families, and remove the shame and stigma associated with sickle cell anemia/disease.