Merriam-Webster defines “kismet”, as a state or end that seemingly has been decided beforehand––fate. It’s ironic that this is the word I would use for Tahirah, Ediomi, and myself’s collaboration given that three of us live with a disease that has so many unknown variables. However, it is undeniably kismet that placed us on a collision course to impact a population we so deeply love.
As a kid growing up with sickle cell disease (SCD), I was fortunate enough to build a community of others living with or directly impacted by the disease. My friends who had SCD were uniquely special to me and played a huge part in my development and interests. Knowing there were others who were going through similar experiences, I found comfort. I was no longer on this island of isolation I had felt for the first few years of my childhood. Needless to say, as we got older it devastated me when I started experiencing their deaths. Initially, there’s always a sense of confusion followed by a line of questioning.
Getting older, I’d experience waves of losing more friends. Fueled by grief, I asked myself how I could best serve the sickle cell community. Fortunately, at the time I was working for The Hole in the Wall Gang Camp which is an organization that serves children with different life-threatening illnesses. Part of my job consisted of me interacting with pediatric SCD patients when they were inpatient at the hospital. One patient who I had built a 3+ year relationship with had recently been transitioned from the pediatric hospital to an adult facility to manage his care. This is a standard rite of passage for most SCD patients. This is also one of the most critical points in a sickle cell patient’s life. Learning of this patient’s passing at an adult hospital shortly after their transition and seeing the devastation it caused on the staff that used to be charged with his care served as another reminder that there was something inherently wrong with adult care for SCD patients at these different adult institutions. The infrastructure was inadequate. Many sickle cell patients have experienced the stigma of being a drug seeker during their pediatric care so imagine how exacerbated this stigma must be as an adult. Add in healthcare professionals’ biases and acknowledging that the majority of SCD patients in America are Black and Brown, access to adequate care can be hard to get. Moreover, efforts to help our disease had been stagnant for as long as I could remember. Vital needs were unmet and civic engagement seemed to be at an all-time low.
Attempting to answer my own question of how individuals with SCD could be best served, four words kept coming to mind: Transparency, Equity, Innovation, and Community—Crescent’s core values. Ensuring that all of our programmatic efforts are crystalized helps us create opportunities for dialogue and feedback from our constituency so it was a no-brainer to include Transparency as a leading value; making certain that sickle cell disease is on a level playing field when it comes to awareness and education, research, and the number of treatment options and curative therapies we are offered to breathe life into our advocacy efforts and fulfill our core value of equity; understanding what has been successful (and unsuccessful) in the past and continue trying to answer the question of how to best serve those impacted by SCD permits our core value of Innovation to be realized, and understanding that we want these three previous values to flow up into our Community core value because they are the root of our organization.
It was easy for us to regularly connect because we both worked out of the same hospital a few days a week and had also known each other from going to summer camp together as kids. At the time, Tahirah had her own nonprofit that was focusing on transitioning SCD patients from pediatric hospitals to adult facilities safely. Having a clinical research background, it felt like every time we talked she would always have all of these incredible ideas on what community needs could be met. We started meeting more often, engaging with our peers whenever possible, and looking for more advocacy opportunities. As we gained a little bit of momentum, one of my mentors told me I should reach out to Ediomi and let her know what we were trying to accomplish. I had known Ediomi from camp as well so reaching out didn’t seem a big deal. Pitching an idea has never been daunting to me but my pitch to her was unnerving because I knew how badly I wanted her to believe in it. Similar to Tahirah, Ediomi had previously started a nonprofit that aimed to educate communities on SCD through art, fashion, and entertainment. I remember us sitting at a coffee shop and mapping out a few ideas I had for Crescent’s trajectory. Ediomi’s creativity is truly unmatched. After our conversation that day, it felt like she would show up to meetings with an absurd amount of ideas and resources for us to look into or use.
As time went on, the three of us began working tirelessly on Crescent. All of us living with SCD, there would be days when one (sometimes two) of us wouldn’t be able to meet a deadline or show up to an event we were expected at due to health complications. It made sense for us to claim an equal stake within the foundation and create a system of accountability for our different responsibilities. Our decision to become co-founders would hopefully prevent delays in productivity and also allow us to get three different stories and perspectives out to the public instead of one. It’s also the decision I’m most proud of thus far. Recognizing that this mission was bigger than the three of us felt organic. It also became more fun as we were able to see change through lives in motion and create opportunities for healthcare professionals to focus on what optimal care for us should look like.
It’s surreal to me how far Crescent has come in such a short amount of time. Successfully providing three different programs to the community; fostering relationships with local hospitals to create real and meaningful change; hosting occasions for sickle cell patients to educate themselves on the best treatment options amidst a pandemic; and leveraging the power of philanthropy for various advocacy initiatives. Today, our organization focuses on changing systemic issues within healthcare that will not only help adult patients with SCD but hopefully other chronic disease patients as well.
The study of our disease has allowed for so many treatments and cures for other diseases to be possible. Crescent Foundation intends to ensure that SCD no longer continues to get the short end of the stick. Personally, I hope to lend a voice to the male experience of living with this disease and the challenges I’ve faced in the past and present. Collectively, the three of us want to see a shift in the healthcare landscape in terms of SCD treatment and care. Uplifting our community through positivity and engagement can only go so far. Yet, I’m confident that our innovative practices and relentless approach will achieve our goal of seeing a more holistic approach taken to this disease’s management. It’s fun to think about where we see ourselves in the future. We’ve had many conversations about what the next five years should look like. I’m also a huge believer in when you fail to plan, you plan to fail. However, if I’m truly going to subscribe to the belief that kismet brought us together to accomplish this incredibly rich mission, I’m hesitant to unveil our five-year plan just yet.
