Amanosi Agbugui is a West Chester University class of 2020 graduate, an adamant Sickle Cell Disease (SCD) activist, and a survivor cured for over 9 years. Her story is not about the trials and tribulations of SCD, it’s about triumph and the perseverance it takes to overcome this unyielding chronic illness. Amanosi’s story doesn’t begin with her diagnosis, rather it was the catalyst that launched her 5K Victory Walk/Run. A 5k walk/run that Amanosi has led for the past four years through her neighborhood. With all proceeds going to Children’s Hospital of Philadelphia Comprehensive Sickle Cell Center. This year would mark her fifth year of holding the momentous occasion, and she carried it out through a global pandemic (virtually distanced of course). Her work is nothing short of inspirational to a world of young people who wish to evoke change themselves.
While many of us are told through examples of history that in order to make an impact, you must be seasoned in activism, old and ‘wise’, or simply a man. Amanosi is walking/running towards change as a young Black woman on a mission to support the SCD world. Although Amanosi was cured of her SCD at the age of 13, she didn’t abandon her community or the fight. Instead, she took matters into her own hands and is helping leave a legacy behind that will enthusiastically walk the miles to end Sickle Cell Disease for good. This is our conversation on Amanosi’s 5K Victory Walk/Run.
Kiersten Adams: Where did your work in the SCD community start?
Amanosi Agbugui: Ultimately, it started because of my own journey, my medical history and how I’ve been cured of Sickle Cell. I felt that many people didn’t know that it could even include that fact [of being cured].
KA: What’s your motivation in working in the SCD community?
AA: It’s very important to educate people on diseases that affect our people, and letting them know this is out here. It may not affect you specifically, but there are people in your community that it does affect, and people down the line who it could potentially affect. By making people aware of this disease, the complications that it has, the lifestyle changes that can come about, and the available treatment options; I feel like that’s what was special and important to me. To let other people know.
KA: How do you talk to your friends or those who may not know about SCD?
AA: I prepare my mind that I’m going to be talking a lot. Giving them the rundown on what this disease is and how it specifically affected me up until I was cured, the whole treatment and what that was fully like. Having that conversation, I feel like is that first big step of awareness.
KA: Where did the idea for the walk come from?
AA: My mom came to me [and] my whole family; we all sat down one day and were like, “Why don’t we start a 5K walk in our community?” Truth be told, there actually wasn’t any other method when this came to mind. You always hear about cancer walks or march for a cure and that whole walking aspect. That was the only walk that brought inspiration. I live in Bucks County, not too many people know of Sickle Cell to begin with, [this walk] is a way of acknowledging and educating people on what Sickle Cell is, and the available treatment options. We wanted to start in our community to raise awareness and money for the Sickle Cell Center at CHOP.
KA: Due to COVID-19 you had to make this a virtual 5K Walk, what prep has to go into making such a big change?
AA: I will say I was upset at first. I was like, “Oh wow, I’ve been doing this for four years, and the fifth year which is this year has to be virtual!” But in hindsight, you think about it and it has to be safe for other people. I had no problem doing virtual and keeping the legacy alive, and the transition is more social media-based. Yes, this walk has my name on it but it’s not just my doing. My team was there to help me post, and have been inclusive in the support of this year’s walk.
KA: What do you hope your work will achieve later in life?
AA: I’m hoping the walk will be an inspiration for people to know that Sickle Cell Disease, even though it’s labeled as a chronic illness, there’s hope. And now that I know that there are ways to be cured, I can be involved [because] financial donations are always going to be helpful to the Sickle Cell community. I try to leave an impact that’s positive, that brings awareness and education to those who don’t know about it, that’s rewarding.
Amanosi has a true sense of compassion for other people. We could all learn something by following in her footsteps, educating ourselves, and doing something meaningful for our community. To learn more about Amanosi’s 5K Victory Walk/Run visit her Instagram here. And if you’re interested in giving back to the SCD community, visit Crescent Foundation’s website to donate here. Or donate directly to CHOP’s Comprehensive Sickle Cell Disease Center here.
Philadelphia, PA: This year, the Living Well With Sickle Cell Passport Project Grant of $20,000 has been awarded to the Crescent Foundation for their new Community Health Worker (CHW) Program. This initiative will provide direct community based services and care coordination for survivors with Sickle Cell Disease from birth across the lifespan to ensure that they receive appropriate follow up care, education, access to medical home, community based services, and seamless transition from pediatric to adult care. This work will extend to the entire Philadelphia area as well as the Delaware Valley.
Of Crescent’s latest accomplishment, Tahirah Austin, Co-founder and Chief Operations Officer, says this isn’t just a win for Crescent but for patients in need of real support after transitioning into adult healthcare institutions, “For the adult sickle cell community there’s no community based organization in Philadelphia or in the Delaware Valley that has a community healthcare worker program that’s strictly for adults living with Sickle Cell Disease. It’s really important to support our adult population with sickle cell disease, especially because many of them come from the Children’s Hospital of Philadelphia and St. Christopher’s Hospital of Philadelphia and they’re familiar with having a CHW as part of their medical team. So it’s good for them to transition into the adult care world and still receive that type of support and benefit when it comes to receiving their healthcare.”
With the support of Children’s Sickle Cell Foundation and the Passport Project, the Crescent Foundation intends to use the funds to:
About Crescent: Crescent Foundation is a solutions-focused organization with the sole purpose of serving the Sickle Cell Disease (SCD) community. Through guidance and support for individuals transitioning from pediatric to adult care, Crescent helps patients navigate the journey of the healthcare system. Crescent Foundations aims to increase awareness, advocacy, and support for evidence-based care for patients, families, and communities affected by SCD, through collaborative action and innovative initiatives.
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