Philadelphia, PA: This September 9th, 2021 from 2 pm -7 pm at 4000 Powelton Avenue, Crescent Foundation, a sickle cell non-profit organization in partnership with American Red Cross will be hosting its second annual blood drive to aid in the current blood shortage happening in the US. 

Many individuals living with Sickle Cell Disease (SCD) rely on blood transfusions and platelets to maintain a reasonable lifestyle and this heavily depends on the availability of blood. With blood donations being down 55%, this heavily impacts the SCD community. By requesting a “blue tag” at any American Red Cross blood drive, your donation goes directly to help individuals living with SCD. Healthy red blood cells decrease the chances of experiencing major complications such as stroke and organ damage. The importance of blood drives in our communities from donors of the same race and/or ethnic backgrounds also decreases the chance of any severe side effects when receiving blood. 

“I rely on the goodwill of others donating blood, without it I don’t even have a hope of living a “normal life” due to the amount of fatigue that comes with living with this disease,” says Idiongo Utuk, who lives with SCD and receives monthly transfusions. Crescent’s blood drive is a way of engaging with the community and encouraging them to give back, learn more about their SCD trait status, and how they can show up for their brothers and sisters in the SCD community. RSVP today via the link below and select “RED CROSS HOUSE” to select your appointment time. See you on September 9th!

RSVP link: BIT.LY/CFscd

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. 

Crescent Foundation

Philadelphia, PA

Philadelphia, PA – On May 29th, 2021 at 7pm The Philadelphia Kappas and Deltas held their BATTLE OF THE DJ zoom concert, part of the larger Kappa Week Philly virtual celebration honoring the fraternity’s ninety-nine years of alumni brotherhood. This event pulled in over 200 viewers, was led by DJ Touchstone and DJ Diamond Kuts, and also acted as a fundraiser for the Sickle Cell Disease (SCD) non-profit Crescent Foundation. 

“The power of collaboration is truly remarkable. Being able to partner with two historically Black Greek letter organizations to serve a disease that widely impacts Black people in the U.S. is synergy at its finest. We are so grateful to the Kappa’s and Delta’s for supporting us and ensuring equity for this historically marginalized disease.” Kyle Smith, Chief Executive Officer says about the event.

When asked what was next for Crescent now with the money raised. “What an amazing success! I’m grateful to the Kappas and Deltas for their dedication to the sickle cell community. Being seen is ultra important and the best way to see us is to show up for us through events like this where one community gathers to uplift another. We must lift as we climb to rise as a United people. There are individuals living with SCD in all areas of Philadelphia that need compassionate assistance and that’s where we are called to serve.” says Chief Marketing Officer Ediomi Utuk-Lowery.

How will the funds be used? What programs will they be allocated to, Tahirah Austin-Muhammed had this to say “It’s an amazing feeling seeing other organizations, especially Black Greek orgs, really unify to raise funds that support our sickle cell community. I know for sure that the funds will be beneficial to Crescent Cares, our community health worker program, that offers direct social services to adults living with SCD.”

Damian Jackson, who helped coordinate the event, was pleased to make Crescent, and subsequently sickle cell disease the central focus. “We knew of the Crescent Foundation because of my prior involvement with the Board. We collectively agreed for them to be the beneficiary because of the important work you do in the Sickle Cell Anemia community. The advocacy for those transitioning from the pediatric world to adulthood is so important and missed by other groups.”

Overall Funds Raised: $21,827

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. 

There’s no need for formalities with someone like Kevin Exil – apologies – Biggs Mula. The Philly-born rapper whose positivity and upbeat spirit engulfs any room he’s in. Or at least, one could imagine on the other side of my zoom window. Sickle Cell Disease (SCD) affects the artist and approximately 100,000 people in the United States. The majority of whom nationally are Black or African American. With many things a performer could be doing, Biggs Mula sits down to talk with me about SCD, music, the future, and creativity through COVID-19 –– all socially distanced of course.

Kiersten Adams: Where did your love for the arts come from?

Biggs Mula (Kevin Exil): My father was actually in a popular band back when he was living in Haiti. He moved to New York and he had a band over there, and then my mom [would] always play any type of music. Pop music, country music, Brittany Spears, Back Street Boys, hip hop. We grew up listening to everything and in my music, you can hear that.

KA: Was there ever a moment where you’d second-guess yourself, maybe had doubts about pursuing this career?

KE: No second-guessing, as soon as I hopped in I stayed there. I don’t know anything else. Out of everything, the thing I’m really good at most is making music.

KA: Were you nervous about telling the world you had a disease? About how fans or peers might see you?

KE: I knew it was rare. I just didn’t know it was that rare. The only artist I knew with it [SCD] was T-Boz from TLC and Prodigy from Mobb Deep. A couple of years ago I was the same way. It’s not like I don’t want to talk about it, it’s more because I don’t want people to like me because of my sickness. But the whole time I was looking at it wrong. Me talking about Sickle Cell actually helps other people.

KA: As a performer, how do you find balance and take care of yourself with such a full plate?

KE: Three, maybe four years ago, I was scattered. I was doing everything. Then when I got with my fiance, she helped me to structure things and that was big for me. I find people with SCD must structure things because it helps your body build a regimen. I was getting sick almost every other month [but] with structure, I’d only get sick maybe twice a year and that’s amazing for me. 

KA: What impact has SCD had on your life or how has it at least gotten you to where you are today?

KE: Sickle cell makes you become an entrepreneur. You’ve got to have your own thing going on because jobs won’t hire you. Every school I went to I got kicked out. Not because I was bad, but because I wasn’t there at school. It stops a lot, but my thing is, it’s going to stop you if you let it stop you, so I just never let it stop me.

KA: Do you consider your work activism for the SCD community?

KE: A couple of years ago I was looking at myself as an artist. Then, when the Red Cross started coming to me they started turning my stuff into a brand and it inspired people. So now, I would consider myself more than just an artist. I wasn’t chasing it. It was the universe who said, “you’re doing bigger work than just being an artist.” I just like to inspire my peers, and maybe the universe will throw that on me but I like it better when the people call you what it is. 

KA: How are you an advocate for SCD?

KE: I feel like that’s what I’ve been doing with my music. If it gets more acknowledgment, more lives will be saved. I’ve been getting interviews from doctors asking me questions, and all I can say is we really need help. Making sure everybody knows there’s something called Sickle Cell and this shit is real. Same way cancer’s real –– it’s the same thing. And I feel like that’s my job. 

My fan base is really universal so I’m just hoping it [my music] touches my peers and more of the kids. Because kids are the future. I want them to know that it’s okay to have sickle cell and still be you. That’s my goal. My message: ToReallyBe You. 

KA: Despite status or wealth, do you feel like a priority in hospitals when seeking care during a crisis?

KE: Honestly, it’s bad. Even with status. First, because we’re black, we get treated [differently]. When you look at us [SCD survivors], you don’t see blood, you know what I mean? No broken arm. So then they think we’re lying about it. And because they think we’re lying about it, they don’t take you seriously, it even trickles down to the nurses. It got so bad one-time last year, I was nearly about to die. At the hospital, I kept telling [the doctor] I’m a hard stick, you know my veins have been gone since I was young. I was telling the doctor, “look, can you guys check my blood before I get discharged? I still don’t feel good”. But they kept denying me. Thinking that I wanted to stay in the hospital. So I was discharged, and I was walking up the steps to my door when I just collapsed. I remember just seeing the sky, [my finance] just holding me and calling my name. My hemoglobin was at 2.3. My heart was beating so fast, that I just passed out. I went through hell. I got a new hip, it was bad. If the doctors had taken me seriously, my falling out would’ve never happened. They don’t take us seriously, a lot of us just be really sick or dying. And if my fiance wasn’t there and really on them, I would’ve died. But God said, “Nah, it ain’t over.”

KA: Do you feel comfortable advocating for yourself, or does preaching about your pain to non-believers take its toll. For people who may be experiencing the same thing, do you think it makes a difference if you have family there or not?

KE: You need someone to be there with you, you have to. I feel like it helps a lot. It shouldn’t be that way, but I feel like in order to save your life and keep you around, you need to have someone with you. Advocating with you.

KA: Why should artists consider collaborating with medical nonprofits and organizations?

KE: I feel like if more artists did this, it would save lives. If people collaborated with the Red Cross, or CHOP (Children’s Hospital of Philadelphia) it would raise awareness and save lives. The bigger it is, the better. More resources and treatments could be offered. My goal is to get my music really big and out there so I can start hitting them with the Sickle Cell stuff. Hopefully, it will catch on and people will take it seriously.

KA: Where did your education on SCD come from and where should others look to be better informed?

KE: I feel like just doing more with the community. [For instance] the sickle cell walks. We should be having more conversations in our neighborhoods — the same way how the Jehovah’s Witness comes to your door [laughter]. The same way! There are just so many ways to get the word out, so if we really want to change the narrative around Sickle Cell, we really got to put the work in. You educate by having fun.

KA: Where can we find you in 2021?

KE: Hopefully more movies, dropping my newest mixtape Charlie II, more music videos. I want to touch more people with the music. To let people know ‘this sickle cell stuff is real’. I thought the whole world knew about it but now that I’m older I realized, a lot of people don’t know what sickle cell is. So my goal for this year is to get more out there.

KA: Lastly, top 3 musical inspirations

KE: Michael Jackson, Drake, Whitney Houston. That’s about it. 

Kevin’s candor about fighting SCD and creating in times of chaos and crisis sheds light on the vulnerability of artists living with critical diseases and how much they give to their craft. When facing adversities posed by hospital staff, it’s often an unavoidable and problematic confrontation between nurses, doctors, and their patients, It’s like, I’m already sick, now I have to be here sick, and fighting with you guys”. These exhausting attitudes can deter folks living with SCD from pursuing their passions. Despite wealth, status, education, or privilege — the universal truth of living with SCD is that your not only fighting for your life, but to be seen, to be heard, and to be respected.

There’s no way for equity to occur if the foundation on which it is set upon is not level. Kevin’s understanding of this truth pushed him to be an advocate in his music which allowed him a national platform for his activism. As creative that acknowledges the intersectionality of art and awareness, Biggs Mula feels responsible to use his stage to inform and educate.

You can follow Biggs Mula on Instagram here.

Joy, melancholy, curiosity; art is the love language we use to convey to the world our personal states, both internally and externally. We use art to condemn violence, to forgo conformity, and on the right occasion, as a radically weaponized tool for liberation. For Nana Kwabena, art is about the emancipation of spirit, and how we use that spirit to evoke change. Not just within our communities, but on a global and diasporic scale. Read his story on art, music, blackness, community, and global outreach.

Kiersten Adams: Where does your sickle cell journey begin?

Nana Kwabena: My parents met when they came to the states— they’re both immigrants from Ghana and met in Ohio. I was born in Ohio. I remember my mom telling me stories of the doctors and the diagnosis, they knew something was wrong, and this was in the eighties. At the time, this hospital wasn’t familiar with Sickle Cell Disease. They knew that something was off and they couldn’t figure it out for a while. To go through that in a new country, I can only imagine the amount of worry that my mom would have when they were raising me. Eventually, they found out that it was sickle cell and they had no experience with it. From there they recommended a doctor that was actually based in Philly who was, of course, Dr. [Kwaku-Ohene] Frempong. So we relocated to Philly, and interestingly enough, we had a family connection with Dr. Frempong on my father’s side, so he was already family. And he was an expert in the field. All of that really worked. The beauty of it is, it worked out better than I could have written it. Getting the best care for Sickle Cell Disease in the country and arguably, the world, it’s not just about the care in terms of research and the resources, but about the people. It’s rare to find that when you’re going through a disease, your doctor is personally invested in that disease because it’s also in his family. That completely changed the dynamic of the relationship.

KA: How has Sickle Cell impacted you between childhood and adulthood?

NK: Being a child with Sickle Cell Disease and coming out of the Children’s Hospital of Philadelphia [CHOP] you had the greatest care. You have people like Chuck MSW, [nurse] Renee, [other] social workers there who literally would go above and beyond to make sure that every single person that would walk through that clinic’s needs were met, and they felt comfortable. They didn’t have to worry about finances. They didn’t have to worry about the outcome of their kids. They made people feel reassured with the kind of care that they were getting out of CHOP. You had so many different staff members, where I literally never thought of them as healthcare professionals. Not until I was an adult. It always felt like my aunts and my uncles that were just taking care of us. I never felt anything other than family when I was in that building. I think, high school or college, is when you’re really getting to a point where you have to start thinking about transitioning out of the CHOP. You hear the stories of how dramatically different the care is for adults. There’s definitely a psychological, mental, and physiologically shift in my dealing with Sickle Cell Disease.

KA: What does it mean for you as a Black creative to partner with a health organization? That’s still something people wouldn’t think of as a natural partnership, but you are blending the genres of health & music.

NK: When it comes to black self-care, black self-love, it’s been obviously a mainstream conversation for us as millennials. I think about our parents’ generation, the idea of mental health for them was a foreign concept. That was a conversation that they never were equipped to be able to have. In a lot of ways our generation has a different relationship with some of these things that our parents didn’t have. So when I see organizations that have young minds with a new outlook for life and new ways to look at old problems, that for me is exciting. We can’t keep having the same old conversation and expect something radically to shift. we have to bring all of our new experiences and new insight that the previous generations didn’t have the opportunity to have. That’s why I get excited.

KA: How did you get into music production? And did you ever think your journey in music would lead to a collaboration with an organization like Crescent? 

NK: I realized that music is medicine. And the medicine that I’ve been aspiring to get involved in this whole time is actually the music. And that’s what kicked off my journey. I started with poetry, spoken word, rap, then rap turned into someone needing to make beats. I actually learned how to make music when I was in the hospital, of all places. Someone had put ‘Fruity Loops’ on one of my laptops, I was in the hospital for back surgery for a month and I remember I was getting to a point where the sounds in the hospitals actually started driving me crazy. And over time it literally creates this soundtrack, like death of symphony, it’s awful. Fortunately, my friend put this program on my laptop and that’s how I learned how to make music. I would burn it to a CD and put it on a disc-man and just walk the hospital for hours listening and trying to understand how I can make things better. So that was my journey into production. I was in a band in college and that was when my artistic journey was really starting to evolve. I focused on the production and it opened up so many doors for me. To be able to work with other artists as well as to create music and still have the lens of being a performer, a writer, of being an artist in my own right. For me, not only is [music] my own medicine, but it has allowed me to be in a position to navigate life where I can actually connect it back to sickle cell and work with organizations like Crescent and other people that are doing amazing work.

KA: Was it hard to navigate the work world with SCD? Did you feel comfortable sharing your disease with your peers or was it something you felt like you had to keep under wraps in order to work?

NK: As far as me being young with Sickle Cell Disease I definitely went through a phase where you tend to hide what you’re dealing with. I remember being in college and studying abroad under Dr. Frempong where I was working in three different hospitals out of Ghana, and looking specifically at the idea of concealment versus disclosure with sickle cell patients that were elementary age. And overwhelmingly, all of these kids were undergoing Sickle Cell episodes and not disclosing or choosing to share with their parents. I interviewed so many kids that would undergo a pain crisis and go sit in the closet and just try to wait it out for hours. They’re like, I don’t want to be labeled with the stigma of being a ‘sickler’. That idea of the stigmatization of chronic illness, and the idea of the need to hide, and not disclose that. I realized particularly in college that the stigma of Sickle Cell Disease is one of my main enemies. But this reaffirmed me, you’re not going to find out by accident that Nana Kwabena has Sickle Cell Disease, I’m gonna tell everybody. And it switched my whole relationship with it. I’ve realized Sickle Cell for me is almost like a technology. Some other people would look at chronic illness and be like that’s a defect. That’s a malfunction. No, it’s actually the opposite. It’s a feature. And when I switched my relationship to that perspective, it changed your approach. Going back to the study in Ghana, I realized I was setting myself up to go down the path of pre-med. And at that moment I thought ‘who’s working on the other side in culture to actually make it cool to have sickle cell’? I’ll make everyone that has sickle cell feel powerful, that’s going to be my mission. 

KA: Why is it important to champion Black work, artists, organizations, etc. Why should more Black creatives try to partner with other predominantly Black organizations and industries?

NK: The freedom that we want to have as black people not just in America, but globally, will never come to us if we never collaborate with black people. Particularly outside of national lines. It’s like this idea of this utopia that we paint for ourselves, that same energy we’re putting into that utopia, should get the same energy that we should be focusing on Black collaboration, not just locally, not just nationally, but globally. For me, that is a conversation. That is the work. When you look at people that have been able to thrive globally, their homeland and their diaspora fuck with each other. If you want to be a global superpower, your homeland and your diaspora need to be working together, and that’s on a cultural level, on an economic level, a trade level, all aspects. What we’re seeing right now in America has been happening for generations in other countries. Where other people know propaganda is a real thing. Misinformation is a real thing. A dictatorship under the guise of freedom is a real thing. The beauty is that when you start opening up the conversation to not just being about America, you start realizing, that’s how it’s been in X, Y, Z country for 20 years. Boom, there’s a cultural exchange and now you have an insight in how we look at American politics. Because when you look at things like Sudan and what Sudan was able to do a couple of years ago, with their leadership that was led by the youth and actually, it was Sudanese that were also in Canada, in America that collaborated and got that guy up out of there. So some of the questions and the things that we’re looking for strategically have actually been done by other Black people in other places. But we’re not talking about them, we’re not even having that conversation. For me, black people can have individual role models of success. We always have outliers. That can be like the artist, that can be the basketball player, that can even be the black billionaire that has a media company. But black people will never be respected globally if you don’t have nations of black success that are thriving, that are competing in global markets. You don’t get that from just anomalies and outliers, you get that from nations. So that’s why for me globally, the conversation of black collaboration has to be our focus.

KA: How does music heal you? 

NK: If music’s not going to be your own therapy then why create music? If it’s not going to help you deal with an aspect of life that you otherwise would have difficulty dealing with, why are you wasting your time? Music is definitely a part of my own therapy. The way that it’s been therapy for me, I wanted it to be therapy for other people. But that’s just one way of looking at it. I also want it to be powerful for me and power for the people that I love and care about. There are times where music needs to be the retreat and the escape. A place that you are trying to get to, to avoid dealing with their harsh realities of the world. And simultaneously, I love when music can be the thing that actually equips you to deal with the harsh realities. That’s the music that I offer. When we’re feeling tired of negativity against black minds and bodies every day, we do need the therapy. And just as important as the therapy is, we also need to arm up. We also need to equip ourselves, we also need to read, we need to be inspired to walk out of our door every single day, know our worth and actually make sure that we’re seeing that value every single day. And I look at music that way too.  

Nana is a musical pioneer who uses his story to focus on a disease that affects so many in our communities. Through his charity AllOneBlood, he is supporting Sickle Cell Disease patients. Through generously orchestrated beats used by some of Billboards Hot 100’s frequenters Janelle Monae and Jidenna, he is able to bear his bones and introduce you to past, present, and future Nana. Nana is helping pave the way for artists with diseases who want their story to be more than what they told it’s supposed to be. Follow Nana Kwabena on Instagram and check out some of his most recent work on Medium.

There is an unconscious image that comes to many of our minds when we think of individuals living with chronic illnesses. Hospital beds and white gowns, the cinematic melodies of heart monitors. But rarely do we think of joy. Well, joy was the first and foremost thought in my mind while talking with Sickle Cell Disease (SCD) survivor and artist Jasmine Joseph who was quick to convey her ambitions rather than her strife. “Im building a studio in my garage. Music producer coming soon.” she says, and I believe her. But this interview wasn’t about highlighting her much anticipated work, it was about shining a light on her. Done so by Philadelphia-based artist and friend Vessna Scheff. These two virtually welcomed me into their lives and with grace and together we spoke about creating art, building community, and practicing the art of healing. 

Kiersten Adams: How did you come across Crescent Foundation or what’s your connection to Sickle Cell?

Jasmine Joseph: I have sickle cell anemia, [specifically] SS. But I’m ready to get included in this organization and be a part of it. I’m in massage therapy school, because I want to do research with massage and sickle cell anemia.

Vessna Scheff: My connection to Crescent is through Simone [Crescent’s Event Coordinator]. She reached out to me and asked if I’d be interested in doing some artwork to help support the foundation and what they’re trying to do with bringing awareness to it. So I feel like I’m pretty new to becoming engaged with that, but I’m really excited to be a part of it, and to have my artwork bring awareness and support for those who are living with sickle cell. 

KA: How can art impact healthcare in terms of wellness? 

VS: The piece that I’m doing of Jasmine highlights and encapsulates what she has brought to the conversation.  idea of wellness,holistic wellness, and it being an ongoing and sustainable practice.. 

KA: Jasmine, as someone interested in massage therapy as treatment, how can other methods of healing replace prescribed ones.  

JJ: My mom and I would go to the hospital, and the hospital would give you too much morphine. To the point where you’re just high out of your mind and just telling them ‘I don’t need any more morphine’. One day I had a crisis and a massage therapist came and gave me a massage and my pain went away. {Massage therapy] will impact the community in distancing from drugs so you won’t be so dependent on it. When you have a sickle cell crisis it’s like having a trigger point or a really tight muscle, so it can be healed holistically instead of giving somebody morphine. 

KA: How did Jasmine become your muse?

VS: I talked with Simone a little bit about this whole project and what her personal relationship with sickle cell is and what it means to be working with Crescent Foundation. The idea of wellness came up, nd thinking about the different ways in which health relates to not just moments of crisis, but everyday moments. Jasmine and I got connected through this program where I got to know Jasmine as a musician. She was an incredible writer, performer, singer, and rapper. It was just a really beautiful connection, and then to hear her talk about sickle cell and wellness altogether; she was just the person who came to mind for me in terms of being asked to create this piece. 

JJ: I don’t mind being the image for sickle cell because it has to be out there. When it comes to meeting people, I won’t let them know that I have sickle cell because I noticed when people find out that you have an illness, they’re nicer to you, or they’re overly considerate and it’s really weird.. Besides that I’m always willing because sickle cell is definitely a disease that people are like, ‘what’s that?’ Or, ‘I heard of it’. I’m always down to give people more awareness about sickle cell because I feel like it’s definitely something that needs to be understood. 

KA: How does Sickle Cell affect how you work together?

JJ: I would say [SCD] impacted it by keeping the AYA family close. AYA is Aspiring Young Artist program that Vessna was doing in different high schools around Philadelphia. Basically they gave us mentors to help us with our arts. I did miss everybody after going to college, but then you guys hit us back up, it just keeps the family going. It’s like glue. 

VS: Every time we reconnect and bring all beautiful different things we’ve learned together and can really talk about them and share them. Yeah, being able to grow together is really beautiful. 

KA: What’s your take on joining a team like Crescent’s that is run primarily by Black folks and people of color?

VS: A lot of the work that I do is about finding or learning and unlearning the histories that I have been taught through school. A lot of the history of the black community, of black culture, of my family has been kept from me. So my artistic practice has been becoming reacquainted with those histories. The history of health and of the black population in the United States in relation to the healthcare system is a very problematic history. Sickle cell is a part of that conversation. I feel like working with an organization that is run and led by black women [and men] is where a lot of answers lie for the future. I am stoked to be part of any groups who are doing that, any collaborations that incorporate that, because that’s the direction that we need to be going in. And those are the voices that we need to be listening to. 

KA: What went into making this piece for the auction? What was the process?

VS: I approached Jasmine and asked if she would be interested in being a part of it. Then the process for me is Jasmine sending me a collection of images of herself. Being able to self identify what image you want to portray and however you want yourself portrayed is really important through portraiture. It doesn’t necessarily have to be like the way you are,it’s how you want the world to know you, like being the narrator to your own story. I read a lot of autobiographies by Black women and I think it is really important to tell your own story. So I asked Jasmine to send me a few images that she felt would be representative of her and how she wants to portray herself. 

JJ: When I was picking an image, I wanted to pick an image where it was like, ‘hold on, this is for sickle cell anemia? It’s not like a store or something? Like this person looks mad normal’.

KA: How’d you pick your medium to paint with?

VS: I just love the medium of watercolor. It speaks to the power of resilience and liberation because water just does what it wants to. It is not bound by your desires, it just does what it wants.

KA: Emotionally what does it do to you when you have to validate your pain in hospitals?

JJ: I actually do get really emotional about sickle cell. I already go through enough misunderstanding and enough disrespect, now I’ve got to go through more. And stress is what triggers the sickle cell pain. Every time I was in a sickle cell crisis, it was because of stress. It just makes me really overwhelmed and emotional because I feel like I have no voice or I’m talking to a brick wall and then people act like they understand but they don’t. 

VS: Having to maintain calmness while experiencing all of that in order to help mitigate symptoms seems like a lot. Like a very stressful situation and then having to be extra calm for yourself and trying to get what you need is a lot to manage all at one time. 

JJ: Yeah. It got to a point where my mom’s just like, we’re going to just use our own stuff to cure ourselves. I was actually experiencing some sickle cell pain and we didn’t go to hospital. My mom just gave me a massage and some tea.

KA: Did having sickle cell or your experience in hospitals push you to become a massage therapist?

JJ: I graduate November 10th. But in order to work in the hospital and be a massage therapist, I have to go back to school and get my medical massage license. I want to have a personal wellness center for people with sickle cell. hat’s gonna take a minute, but it’s going to happen. 

KA: Vessna how does hearing these stories change your view of this disease or view of Jasmine?

VS: It correlates to a lot of stories that I hear about the lack of holistic health for chronic conditions that people have when they go to the hospital— it really frustrates me. I think the discussion of sustained wellness is really important. In terms of my mom’s side of the family, being less trusting of hospitals in general and the care is because there has been this distrust within the black community and especially in relation to black women entering hospital spaces. Those are all the things that I think about when Jasmine tells her experiences, and how it relates to a lot of experiences that people in particular, people of color have in these settings. You need help in terms of a crisis or surgery, but you really need health every day on an ongoing basis. What the healthcare system ends up doing is it separates you from being connected to the experiences that you have within your own body. Struggling with a relationship with your body, feeling like you don’t have agency over relationships with your own body, 

KA: What’s got you excited about partnering with the Crescent Foundation during the month of September?

JJ: It gives me hope that people are more knowledgeable, especially because you guys are using artists, like painters, rappers, singers. That is what draws people in because that’s where people’s emotions are connected to. Using something as deep as art to give more knowledge about sickle cell or just wellness period I feel like was a very smart idea. It gives me hope that people will actually listen and be more considerate. 

VS: It seems like it’s really thoughtfully put together to include and support so many people, and so many different ways in which people could engage with wellness. I think that is just a conversation that needs to keep happening for sickle cell. For people who are living with sickle cell, but for people in general who are living with chronic diseases or experiences to know that that support is around and available. 

KA: How can the healthcare world better include artistic practices for healing and outreach? 

JJ: Art is healing. Art and illness definitely should come together. 

VS: I second that in terms of art being very healing. Art is a place where you can create the world around you. You can convey your imagination or what you believe or think for the world. I think that’s a really important aspect. There is room for you to share and express your ideas, and art is a place where you can do that. It’s exciting to see. 

Vessna and Jasmine are an artistic duo that has partnered with Crescent to give meaning and a face to a disease that is often forgotten. Together they amplify what it means to be a Sickle Cell Disease survivor, artist, and creative. To learn more about the artists, make sure to follow Vessna on Instagram, and check out her website for more noteworthy art.

Early in Kajuan Thorpe’s life he was diagnosed with Sickle Cell Disease (SCD). Only guessing that he was diagnosed as a baby Kajuan doesn’t dwell on the fact long, maybe its having lived with SCD his whole life, or maybe because it’s motivated him to live his life to the fullest, Kajuan has proven that Sickle Cell Disease is not his kryptonite, but a central factor to positively changing how he navigates the world. To be frank, the dudes no joke. Growing up in Philadelphia Kajuan has walked the hallways of the Children’s Hospital of Philadelphia’s hematology center, Philly’s streets, prison wards, all before finding his own path in Fashion. I spoke with Kajuan about how his incredible life has been impacted by SCD, growing up in Philadelphia, how fashion came to be his true calling, and why he’s so compelled to not only give back to the SCD community but leave a lasting influence for our youth.

Kiersten Adams: How does Sickle Cell Disease impact your everyday life?

Kaujuan Thorpe: On a day to day it’s the same thing with any other individual living with sickle cell. Sometimes I have trouble with moving around due to the crisis, sometimes I’m a little moody. But I never let that consume me out the course of the day because even when I am sick, I rarely visit the hospital. I have problems when I do go to the hospital too and if I’m there for two days or three days, I guess that might be too long of a stay. You know how it goes, the stigma that they have on us.

KA: You talked about being able to see your friends in the hospital when you were younger, what was your transition like from pediatric care to adult healthcare facilities?

KT: Totally different. It was like a whole 360 coming from CHOP. And this could be anybody that you speak to with sickle cell. Going from CHOP, [where they] take extra care of us, and moving into adulthood where it’s like, ‘you guys don’t really look like y’all sick.’ In the ER I’ve been asked before, ‘are you still sick?’ Then another doctor comes in and asks, ‘am I feeling better?’ even though I just rated my pain on a scale from 1 to 10, a 10. My last visit, I actually was forcefully released, and that was the first time I ever experienced that. With my friends, they’ve told me about times they ended appointments and nurses are sneaking in the room or people come in and question them. 

KA: What’s it like seeking treatment as a Black man in the healthcare system? 

KT: Being African American right now especially in this climate, I just feel like it’s an inhumane situation. With healthcare, in fashion, and business, It’s on a downward spiral in our community with everything that’s going on. There’s a lot that might not get spoken on because we also feel like we don’t have the upper hand.

KA: How comfortable are you with advocating for yourself in a hospital or ER?

KT: I’m always comfortable with advocating for myself and I never let people put me in a space where they think they know more than me. I don’t care what degrees you have, what person you know, how long you’ve been in business or anything because everybody is entitled to their own opinion. That’s where I feel like Crescent is putting us in a good space especially during this climate with black lives matter. Instead of trying to be understanding and knowing of somebody’s pain, it’d be easier to just listen. 

KA: Do you feel seen or heard in the healthcare system? 

KT: There are certain things I feel should be accessible to us. There are  certain people that should be speaking up for us. We’re not paid attention to as much as all the other diseases because of our race. I’m pretty sure if it was white males and females that suffered from sickle cell disease, it would be a lot more money dumped into procedures and research.

KA: Do you feel like you have access to resources in adult healthcare facilities?

KT: I’m not going to say that we don’t have great resources concerning sickle cell because there are programs. I do feel with getting older, there’s not much awareness around the sickness of adults versus being a kid with sickle cell. 

KA: I want to know about how you came to build this fashion company that is Rare Geneticz.

KT: I came up with the name during a stint in prison. I just made my mind up when I was sitting in there that this is not the route I want to take. And with me having so much influence in my family and my community, it’s like people hold you at a higher standard. I came up with the name around 2007, and it fit perfectly with the message I’m trying to get across with me living with   sickle cell. 

KA: How do you think you and your work will impact the SCD community?

KT: It will be the leading example for advocating a change in my community. There was a time when I was young that I dabbled in selling drugs, I have a firearm charge, but it’s kinda the norm in my neighborhood. It’s difficult for me to talk about this, but I just had to bury a family member of mine, my little cousin died from senseless gun violence and I just felt like with me doing these things and me moving as fast as possible with building a brand and meeting different people and showing my family different things, they won’t be subjected to being in the streets or being killed in the streets. 

KA: What pushed you into fashion?

KT: Learning about different brands, products, and different ways to wear clothing. During my prison stint, it’s like you’re trying to find where you belong, or you’re trying to find out who you are or what’s your purpose for being here? I found that purpose in fashion because that’s what comes easy to me. People started saying to me, ‘yo, we love how you dress man. You are always ahead of the curve.’ Stuff like that made me really dive head first into starting my own brand. Because I figured instead of me buying my own clothes, why not make them.

KA: What made you want to partner with Crescent foundation?

KT: I feel like I owe it to myself, my family and the sickle cell community. I don’t want to be labeled as a person that had success and just left. Because that’s the problem that we have now, nobody is trying to lead. It’s just everybody leaving. I want to be able to break that stigma of us being drug-seekers and people not having a full understanding of what Sickle cell is. Not getting attention that it deserves. I want to be a part of the change because like I said growing up, nobody was really spreading positivity through my community. Organizations like the Crescent Foundation are assisting not just our people, but people in general. I feel like Crescent is a perfect foundation right now to lead by example. 

Kajuan is a unique individual, who has turned his unfortunate traumas into positivity and beauty. As a society, we all should take a page out of Kajuan’s book and reflect on ways we can make the human experience better for everyone. To support Kajuan and to follow  his rise in the fashion industry, follow  his Instagram today.

In each of our lives, we are presented with moments of opportunity to do something beyond ourselves for a greater cause. For Bridget O’Rourke one of these moments came when her friend and Crescent Foundation co-founder and CEO, Kyle Smith, asked to commission a piece of artwork to be auctioned off for the #STRIVEfor100K Art and Clothing Auction. Working as an outreach specialist for kids at Children’s Hospital of Philadelphia and St. Christophers as a resource for art therapy, Bridget has come to learn about blood disorders and Sickle Cell disease through personal exposure and by forging connections with survivors themselves. I spoke with the artist about her work, dedication to Crescent’s cause, and the holistic side of art worth exploring in relation to healing in healthcare.

Kiersten Adams: I know you’ve worked with Kyle [Smith] in the past but outside of your friendship, how have you come to learn about Sickle Cell Disease? 

Bridget O’Rourke: We worked together at the Hole In The Wall Gang Camp, which is Paul Newman’s nonprofit organization. I knew about sickle cell, but I didn’t really ‘know’. I’ve heard of it, but I didn’t have much awareness. I’m a hospital outreach specialist [for kids]. Essentially I do games and art therapy with kids in and out of the hospital at the children’s hospital of Pennsylvania and St. Christopher’s. We work with kids with any sort of diagnosis, so oncology, sickle cell, neurology. I was primarily exposed to sickle cell pretty much through that job because I worked on the hematology floor. So most of my patients had sickle cell disease. That was where I was able to have a real understanding of what it was and its side effects. Also working closely with Kyle for as long as I have, I learned about it through him. It really opened my eyes and I feel like it’s not talked about that much in the medical community. 

KA: What drew you to work at a summer camp made specifically for kids with diseases? 

BR: Working so closely on the hematology floor. Each week during the summer we’re given the chance to go volunteer at the Hole in The Wall Gang Camp, I went to the sickle cell diagnoses week one summer. It was just a moving, and emotional thing for me that I did three years. My heart really latched on to these kids. I saw every day how much they suffered, and how much they needed the necessary attention I felt like they weren’t getting. In my mind when you’re not in the medical world, you don’t know about these things. Having this job and working in the kid’s hospital really helped me have a better understanding of everything. 

KA: How does pivoting to an online platform change things for healthcare, or for artists like yourself who are partnering with a healthcare organization for their launch?

BR: I think what you guys are doing in September is great because social media is such a powerhouse. I feel like it’s such an easy way for people to get attention. The avenue you guys are taking with the arts, fashion, and health, understanding the culture, and taking an artistic approach to educating people about the disease really helps peak people’s interest. 

KA: What made you want to partner with the Crescent Foundation?

BR: Working with Hole in The Wall and with the sickle cell patients motivated me to make something. When I create art it’s like, ‘what’s the purpose?’ ‘Why am I making this painting?’ ‘What am I trying to say?’ So I think the goal as an artist with anything that you make is to create work that speaks to people and reaches out to someone in some personal way. I’ve always admired artists that create work for a sense of purpose. I think art has the power to really make people look at things. So that’s why I wanted to do this, it’s something important to me. 

KA: What’s your take on the holistic aspect of healing? Essentially I want to know how you think art can heal?

BR: I’m like a strong believer in holistic mitigation. Just from personal experience, seeing how much it helps patients. Sometimes it can be like switching on a light in their mind. I think art can be a really powerful tool that helps lower blood pressure, anxiety, and mental health. My role is always hard when you’re in the hospital and I see all these doctors and nurses, sometimes I feel less important, but then I’ll talk to the nurse who says, ‘they’ve been waiting for you all day!’. The goal is always to provide some sense of comfort and use. And I think that painting really does it, not just with sickle cell but with any sort of anxiety and stress. 

KA: You’re doing a collaboration with the Crescent Foundation, tell me about how you got your start in the art world. 

BR: I’m an oil painter. I have my BFA in fine arts and I started to discover that I wanted to be an artist when I studied abroad in Italy. After I graduated from college, I did a residency where you essentially live somewhere for a month to create work. I did a residency in Vermont called the Vermont Studio Center, back in 2007. It was really cool because I was always told by my college professors before you decide if you want to go back to grad school or anything, try the residency to understand what it’s like to work on your own. I did that for the month of September and it was just really neat. It was after two years that I decided to go back to grad school. I got my MFA from Parsons and when I left New York, I found that I really wanted to go back to portraiture just because it’s cool and I felt like for a while abstracts didn’t do it for me. So then my work changed and I found working on people a lot more interesting. 

KA: What kind of piece did you have in mind when making something under these specific circumstances?

BR: I feel like with something like this, you really want to send out an important message. I knew I wanted to do a portrait, but I didn’t really know how I wanted to portray that person and what colors I was going to use. I was looking at the colors that Kyle even chose for his website and decided the palette I’m going to use is predominantly like a grayscale with only red and pink tones. In deciding what I necessarily wanted to paint, I knew I wanted to do some sort of portrait, so I started to delve into the history of portraiture,  African American culture, and different artists. I landed upon artists Elizabeth Catlett who was an African American artist and she did work cuts and printmaking. I really love her work because she did portraits in the 1950s of white sharecroppers and slavery, but she wanted to shed light on a movement. She wanted to portray the women as heroes, but also as suffering. And when I was reading about her work, I was thinking about a movement. 

KA: So you were inspired by the duality of joy and suffering?

BR: The patient would not be a hero, he’s suffering, but also showing the beauty of this person. It’s mainly based on this idea of her [Catlett’s] work. How she showed the beauty and the hope with this person, but also shed light on their suffering as they go through it. In my head, I wanted to create a portrait that was celebrating the patient as someone who is battling this disease and then shedding light on the patient as someone suffering.

KA: Have you ever participated in something like this before? The auction part, not the pivoting due to a global pandemic.

BR: I used to work a lot with the Crane Art Center in Kensington. They have a huge art auction every year to raise money. They’re a nonprofit arts organization and you can donate work each year and all the proceeds go to the Crane Arts Center. And then right after I graduated, I donated a huge painting to the ALS foundation in New York. I’ve always really enjoyed auctions because I think they’re really fun— the whole experience is thrilling.

KA: Why should others similar to your line of work freelancers, artists, individual businesses consider partnering with Crescent or health organizations? 

BR: You would never think artists would typically be looking at a health organization for anything, but this brings in a whole new audience because you’re involving the arts or you’re involving fashion. I think any sort of partnering can make raising awareness stronger, which is what a foundation that’s so young really needs. For me as an artist, I think it’s beneficial to everyone because it shows your versatility and you can make work that isn’t just for a specific audience.

A seasoned artist, Bridget lending her artistic ability is proof of her own versatility. And a testament to what artists can do when partnering with organizations that are all about social good. To learn more about Bridget and her work, follow her on Instagram.

Calligraphist, calligraphic, calligrapher, however you manage to say it, Danielle Tin is a calligraphy artist and an expert of the craft. At the end of 2017, Danielle launched her own calligraphy design business under the name Tin & Type. Doing mostly signage, weddings, or other large events Danielle’s skill in brush stroke is what helped put her name and artwork on the map. This week Danielle shared her artwork with the Crescent community, read below her story on finding Crescent Foundation, finding calligraphy, and finding her calling in spreading joy however she can. 

Kiersten Adams: How have you learned about Sickle Cell

Danielle Tin: Through Ediomi. I work with her at American Express. We learned that she had sickle cell and throughout the past couple of months, and I’ve reached out and told her I want to get more involved. She gave me the down-low on Crescent Foundation and what you guys are doing in September. 

KA: How has working with an individual living with  individual living with SCD ll changed your outlook on this disease or the role of ableism in the workplace?

DT: I’m still learning about the disease itself, but she [Ediomi] comes in regularly which I think is really strong because I’m like, ‘I don’t want to do the commute and I don’t want to be outside’. So it’s a really great perspective to see that she still wants to be in person. But I think seeing her in a company and on a team that does value her work because she gets it done. As long as they have the resources and the flexibility it shouldn’t be a burden. It shouldn’t be that they feel obligated to be somewhere or to be online if they have to take care of something personally, I think we all kind of need to recognize that.

KA: Why should conversations on Sickle Cell and other chronic illnesses’ be brought up in the workplace? Why is it important for people outside the SCD community to know about this disease?

DT: I think it’s forgotten, but also invisible. You wouldn’t be able to tell someone had it unless someone tells you. It’s not something [a disease] that’s visible in the day to day. I think that’s really important because we need to understand how to work with our peers that do have sickle cell and support them in that sense. Other than Ediomi, I don’t know other people with sickle cell. Maybe I do, but I know many people with cancer and I’ve lost people with cancer. So I think that’s a big part of what she explained to me is that there just aren’t resources and that upsets me. There is a community out there and it’s not like they’re new, but they still don’t give you resources. So I think about the people I’ve lost with different diseases, they also didn’t have certain resources, but it’s still more than what sickle cell [patients] have. It just shows where there’s disproportion. It’s definitely something that needs a bigger voice. 

KA: Has talking with an SCD survivor changed your perspective on our current healthcare system?

DT: Not so much yet, but I think because we haven’t gotten down into the nitty gritty of what a hospital relationship looks like. My husband is in healthcare and I don’t think he knows about that, and he deals with cardiovascular patients. She [Ediomi] mentioned it’s like maybe a paragraph or two on it [Sickle Cell]; so I do think education has to be brought up. I’m sure that there are people in the healthcare industry who know about it and they just say, ‘oh, well my superior doesn’t invest too much in it. So I won’t’. More hospitals should really take notice and make their hospitals accessible because I can imagine that they would bounce patients back and forth. And I don’t know if that’s the case, but I can assume that that’s what happens.

KA: How did calligraphy come to be another calling? Were you someone, like me, who found themselves oddly relaxed by calligraphy youtube videos, or have you been practicing for a while?

DT: The best thing to say is that I’m self-taught. I always had an interest in the arts and like you said, watching videos. But it was sparked because I’m in the event marketing industry. I hired a calligrapher because I was interested in them for an event, and she would letter inspiring quotes for people. In-person she did it super quick on these beautiful black canvases that people could take home. I was just in awe, so I tried to practice on my own and it looked terrible, but then I just kept watching videos. And I was getting married that year, so I’m like, ‘I’m going to do this on my own wedding invitation’. I did the lettering on the envelopes, and I didn’t want to pay anybody but I was really into it, and it worked. I had major cramps and it took forever, but it worked, it looked beautiful. So I kept practicing and testing out new materials, not only paper, you could do it on glass and on different materials. So it’s really fun to play around with. But that’s how I kind of started. That’s also why I think that everybody who watches with me will get the basics. It’s really just understanding the strokes and how to put pressure on your pen or marker. And once you know those tips, it’s just practice after that. 

KA: How does the art of calligraphy relate to healing or therapy for you?

DT: It’s definitely my de-stressor, even though sometimes it could be frustrating because I have to do it again. It’s challenging and it’s not for everybody, but I think for most people it’s a way to challenge yourself. I do it on my time like I’m just going to hunker in my room and not talk to anybody. You’re just so focused, you’re trying to better yourself because you’re trying to do one version and then you’re like, you know what, let me try a different version. So there’s so much flexibility with being creative. It’s a mood booster, it keeps your brain running, and you’re calm during it. And you could find yourself doing it for hours and not think about anything else. And I think that’s really important for your health and trying to stay stable. It blocks out everything else that’s going on in the world. I think that’s great for people who need something, that’s going to keep them stable and kind of invigorates in that way.

KA: Why should other artists consider partnering with Crescent or other Sickle Cell organizations if they didn’t know this was a market for them? Why did you?

DT: It’s just hitting people’s interests in a way that’s subtle, but in the back end, it’s things we never thought about. I’ve been seeing with COVID a lot of the retirement homes where everybody has been stuck and they haven’t been able to have visitors, so they do art, and they’re posting it online and that is really fantastic. And I think it’s something that we just haven’t thought of before. There’s just a lot that can really resonate with people. For my community, I definitely want more awareness. That’s flat out. I really don’t think my network knows. I didn’t really know much before working with Ediomi, so that’s something I would work on. I think with social media and through shareable content, that’s the best way. People are willing to learn about that and share and it could be as simple as doing a beautiful post that resonates. Then I think people will organically start to learn more, but they just have to have that one connection. I want to bring joy, and I think that’s what I can contribute in terms of pulling that out of people and really making sure that it’s empowering them and inspiring them in a fun and simple way. 

KA: How has pivoting for an online platform for this event affected you?

DT: Even before COVID, I was turning more virtual. I’ve been starting to do more stuff on my iPad and doing digital lettering which was really cool. It would be more graphic design and learning some tips there versus pen and paper or whatever material I’m able to do. And then I’m also able to print it, I have a special printer. So once I digitize it, I can print it, put it on vinyl, put it on your own Tumblr, and like customize it with your name which is really awesome. So I was already starting to go into that, but because everything is digital I thrive on social events, weddings, and signage and place cards and things like that. But that fell on the wayside. So I had to think about how can I pivot in that sense? It was more of digital creation, just making sure that I’m still relevant on social, trying to learn new skills. Even graphics, cartooning, just expanding that skillset. You take it slow, you just simplify the process and it’s just learning what really resonates with people like behind a screen. The format is just different, it sucks but that’s the world we’re in. And I think it totally could work. So I’m still excited to bring that to life.

KA: Can you possibly walk me through a virtual calligraphy class? What do you intend to do?

DT: Yeah, so it’s going to be kind of step by step where I’m already going to have pre-made samples ready. So that’s the first chunk of time, I describe what calligraphy is. It’s a pure intro 101 of how I got into it. And then also some samples so that they could see that it can be a Crayola marker, a Sharpie, professional calligraphy, ink pen, there’s just so many different mediums. So I would want to have a bunch of samples set up so that people can see and understand everybody’s is going to look different and that’s totally fine. Then we’ll go through a breakdown of strokes. I think like going through the strokes, then having people practice then calling out to see who’s brave enough to share their samples. I want to make it as interactive as possible versus people just watching me. The purpose is to get people to practice on their own and to really understand what goes into it. 

KA: When did you decide to make this a business rather than just a hobby? 

DT: It was officially at the end of 2017, after my wedding, right after I started doing those invitations because I practiced hard. I had some time, so I was just doing it a lot. And that’s the only way that you get better. Maybe I’ll bring up in some of the samples my first takes on stuff [calligraphy] so people can see the transition. I started practicing on different materials with just a couple of items. I really made sure that whatever I was like posting, I started promoting within my friends and trying to get referrals. The traction hit, I think a lot of it was for weddings or signage, and a lot of it was friends in the beginning, but I was willing. Let me just pump all this stuff out so that I have samples to show so I could have referrals. Obviously this year, it’s been a little bit light, but constantly trying to think of new ways to monetize. So it’s been about three years and still technically on the side, but it is a business that I have to constantly think about. How to price myself, how to promote while doing everything else. 

KA: How long can a wedding invitation or another form of this work take? How long are you perfecting brush strokes?  

DT: Everything is different. I would say if it was just like place cards, and I had to write the names and it was pretty simple, that could take me a couple of hours for like a hundred or more. For signage, the actual doing of it could take half an hour to an hour, but there’s always mistakes, soI have to redo. A lot more goes into it on the back end. Even though I’m actually writing for an hour or two, it probably takes half a day or eight hours total.

KA: What does it mean to be a Crescent Foundation Partner

DT: I love it.. I want to spread that love, that joy, and then just be a part of what you guys are growing. Really making sure that I’m not just the superficial business. For me, it’s great. I could monetize off of it, but that’s not always what I care about. When I can get passion projects, if I could get charitable components and tie myself to that, it’s not to show it off, it’s because I truly care and want to help. 

The art of calligraphy is not to be taken lightly. It is mastery of pen, paper, brush, and stroke, and it is not for the weak-willed or weak wristed. To discover more calligraphy follow Danielle’s Tin & Type page on Instagram and continue to check back throughout the week for other stories from artists, innovators, and creatives doing the work of spreading joy.

Ini Ikpe is a great dresser, and he wants you to know it. A stylist to some of the NFL’s biggest players like Philadelphia Eagles Malcolm Jenkins and Jordan Matthews, Ikpe does not shy away from a challenge or the public gaze. I’ll admit before getting on the phone with Ini, I was skeptical as to how we could find common ground. His world of expertise was clearly in fashion, and I didn’t know how he’d respond to questions about the state of adult Sickle Cell Disease care. But our conversation took a turn, not away from SCD, but down another intersecting lane that explores the idea of healing and healthcare in retail therapy. In our conversation, Ini and I talk about fashion as healing, as therapeutic, and as an outlet that can lead to social change.

Kiersten Adams: How did you learn about sickle cell disease?

Ini Sebastian Ikpe: One of my best friends, Olu. He has sickle cell and I’ve been in the hospital with him on numerous occasions when he had a crisis. That’s how it affected me.

KA: Why should our communities know about this disease?

II: Correct me if I’m wrong, but sickle cell affects the African American community more than any other community. I also understand that growing up in West Philadelphia, a predominantly black neighborhood, from elementary school to middle school, to high school, Sickle cell has always been a “thing”. Maybe one out of 10 people, maybe 15 or 20, I don’t know what the statistics are. I believe that there isn’t enough spotlight on it because it affects the African American community so prevalently. If it affected another majority group then I’m sure that there would be cures or treatments that would help the situation. I think it’s not looked at as a priority when it absolutely should be a priority. 

KA: I want to get into your line of work, and ask if you think self-care is important?

II: I enjoy the look on my client’s face when I help them get dressed. I know a lot of people who are dealing with diseases, whether it be Sickle cell or anything else. A lot of the time when they’re going through this battle, they don’t want to get dressed because it’s almost like ‘why’? I understand that you’re going through something, but instead of wearing sweatpants put on these nice jeans. It’s like the hall of fame player, Deion Sanders said, “when you look good, you feel good.” Then, he took it further with, “when you play good, they pay good.” When you get dressed and look a certain way, it can help a mood. That’s why I enjoy getting dressed and helping people get dressed. 

KA: I don’t know what it takes to be a stylist. Is it just an impeccable wardrobe, saying I know what looks good on other people? How did you fall into being a stylist? 

II: Before I joined my fraternity, I always got dressed and just tried to stand out. My goal was to get the attention of people. I got into fashion in 2015. I just left the bank I was working in for five years after college. I happened to meet one of my fraternity brothers who played for the Philadelphia Eagles, Jordan Matthews and he liked my style. Randomly, two weeks later, he hits me up and says, ‘Hey, could you help me get dressed?’ And I’m like, sure. Then the player Marcus Smith. He asked me, ‘are you a stylist?’ And at that time I didn’t consider myself a stylist, but I said, “yeah, I am.” That’s just how I was able to create a nice portfolio for myself and then after a while I’d dressed probably four different players. I started reaching out to players from other teams, I showed them the work that I had already done. It just, it just clicked. That’s how I got into styling. 

KA: What work does a stylist actually do? Can you describe to me a day in the life? 

II: Once I meet a player and the player is interested in working with me, I create a mood board. And based on the digital mood board, I take images of different players or celebrities that I think look good and I’ll compile them all together. I’ll tell them to ‘pick out your favorite looks and let me know what you like’. And then I ask who are some of your favorite designers? Styling is about educating your client. So my job is to introduce them to new brands. Keeping your thumb on the pulse of the new fashion trends. Once that’s completed, they send the budget, then I shop. I travel to them and we try on a bunch of looks. What they like they keep, or they return it.

KA: Who’s your dream client?

II: Number one, the first person I would love to dress for any occasion would be Barack Obama. President Barack Obama. My second person would be Giannis Antetokounmpo––he’s Nigerian. He plays for the Milwaukee Bucks, MVP last season, and he might be MVP this upcoming season. And then my last person would be Will Smith. I’m from West Philadelphia, I went to Overbrook high school. He’s always been my favorite actor. 

KA: How have you continued to find work through the pandemic?

II: I created a series called Styles Sold Separately, where I interviewed professional athletes to get to know about who they are as men. So far I’ve interviewed three players and two episodes are up on YouTube at the moment. We’ve learned about who they are, their passion projects, and what they’re doing outside of football. We can peel the onion back and get to know who these players are as men. These players are husbands, fathers, entrepreneurs, business owners, investors, and a lot of the time we as a community don’t look at them like that. We look at them as gladiators and it’s like, no, these guys are multi-dimensional. So it’s important to highlight that. 

KA: Where does the innovation and desire to style come from?  

II: I’m a creative at heart so I just enjoy creating. Through creating, there’s an ability to help. So whether it’s just being an advocate for somebody, or creating content that’s able to go deeper, I’m always creating. One of the things that I enjoy doing is writing. When I wake up, before I go to bed, or early in the morning, so I keep a notepad and pen by my bed. I’m inspired by everything around me. 

KA: Why should creatives such as yourself consider partnering with a health organization? What benefits do you see with artists, stylists, and other creatives partnering with companies like Crescent?

II: I think everybody should partner because if you have a talent, you should want to be able to help. It goes back to not taking my life for granted. We could very well be the people in the hospital terminally ill, and if you can do your part and help somebody make their day feel good, then do that. As a creative, I feel like that’s my responsibility. Help inspire somebody. I forget what the phrase is, but because something doesn’t impact you individually doesn’t it mean it’s ok. We talk about systemic racism and we’re like, ‘Oh, well that doesn’t affect me, so I don’t have to worry about it.’ But in retrospect, actually, you should worry. And our part doesn’t have to be this big grandiose thing. It could be spending it in a hospital, donating money. We all have to do our part.

KA: How can we usher in change for our healthcare system, and maybe even our society?

II: The hope is that somebody else will pick up the mantle from us and move it forward. Because people have died to be part of, to be in a position that we’re in. So if you’re not doing anything great, or you’re not moving the culture forward or doing your part, then what exactly are you doing? I had a conversation with a young lady who was like, ‘oh I don’t even think I’m going to vote’. And I’m saying, ‘I’m going to be really brief with you, but what you take for granted, people died for it’. If you want to see a change, you got to be the change. 

If by the end of this story you’re questioning which items of clothing in your closet bring you happiness and meaning, don’t worry, you’re not alone. Ini has made it abundantly clear that while our well-being is not entirely dependent on how we look; looking good, which has proven to lead to feeling good just may be what the holistic doctor ordered for alternative care. To follow Ini’s journey, check out his Instagram here and make sure to check out his series Style Sold Separately currently airing on youtube.

If you ask any Sickle Cell Disease patient how they stay healthy and out of the hospital, they’ll tell you one of the many keys is a well-balanced diet. Those who take their health for granted don’t know the often morbid reality of how a poor diet can be the final straw that sends an individual living with SCD into a crisis. For individuals with chronic illnesses, healthy eating isn’t just a passing fad done for Instagram, but a serious lifestyle choice that takes dedication, time, and knowledge. And knowledge about food is what gave Alex Garfinkel his career. Owner and Executive Chef of Balboa Catering, Alex is partnering with the Crescent Foundation this September to share his wisdom on clean eating and healthy meals you can make from the comfort of your own home. I spoke with Alex about the intersectionality of food and healthcare, and how wellness begins with what we put in our bodies.

Kiersten Adams: How did you create Balboa Catering Company? 

Alex Garfinkel: I have been cooking professionally since 2002, and in 2010 I did some traveling. I worked abroad for just over a year and I came home and I opened a close friend’s restaurant. Throughout all that time, I had some knee injuries and I had a number of surgeries. I came to the realization that due to my physical limitations, I can never really offer my mind, body, and soul to someone else I respected in the culinary world without the fear of letting them down one day. That itself is almost like Sickle Cell, the frustration of wanting to devote yourself to let’s say, the best chef in the world and being afraid to because one day Sickle Cell is going to hit and you’re just going to have to stop. That’s a deal-breaker in the restaurant industry. So I decided to do my own thing and I started my business. First, it was then called AG Catering in 2013 out of my parents’ house. But then one of the first jobs I was awarded was the Creed movie pre-production food program for 50, and then later a hundred people a day for breakfast and lunch. So I was doing that out of my parents’ house for about three months. Made enough money that we were able to take over our first supper club at a space in Fishtown in 2014 and we called it Balboa Supper Club. We were looking for a name and we couldn’t come up with anything good, then someone I was working with said why not Balboa because of the Rocky movie series, and I said that’s it. Let’s go with that. It was easy and it meant something to Philadelphia and it was relevant to our first job. 

KA: How have you come to learn about Sickle Cell Disease

AG: I guess it was basic awareness but no real understanding of it. I had an employee named Earl, Earl was a cook for almost two years off and on, and he told me when he first started, he had Sickle Cell. That meant there’d been times he’d just have to go to the hospital and he didn’t know when it was going to happen. It’s just a shitty situation, and I’m like, ‘okay, cool. Just let me know, whatever you need.’ While working with him, he had a number of episodes where he was out of commission, and it was really rough for him. At least as a boss, it’s frustrating not being able to have consistency in your employees, but then you understand people have things that are just well outside of their control. So that was my first experience working with someone who had [Sickle Cell Disease]. 

KA: What’s it like having to work around someone’s condition? How do you deal with possible inconsistencies?

AG: I have dealt with this issue through something called pericarditis. It is a very rare heart condition that’s genetic, and it took me out of work many times. You don’t know when it’s coming and when it does, you just have to stop everything and deal with it. It’s frustrating because there’s no real cure for it, it’s just something you live with. It’s not as dangerous or as painful as Sickle Cell, I think, but definitely the frustrating part of it is just not being able to control it. Not knowing what’s going to happen when it pops up. It just takes over everything that’s happening in your life, and you have to reprioritize to deal with that. It’s a hard thing for anyone to have to deal with but I was able to empathize with it [SCD] through my experiences with pericarditis. 

KA: Do you think living with your own health complications has helped you empathize with Earl?

AG: Definitely more so than I would have otherwise.

KA: As someone who employs immunocompromised individuals, how is indoor seating harmful?

AG: When you start looking at it from that perspective, that’s even more of an irresponsible and dangerous situation that we’re creating. The average worker in the hospitality field doesn’t have a lot of money, a lot of income, a lot of resources, no savings, barely scraping by, probably a lot of student debt or medical bills. Then you’re saying the only way you’re going to be able to get paid is if you go into those situations which may or may not be dangerous. That is another form of classism. I think restaurant owners and business owners are responsible for the community too. If they’re going to work, create a safe work environment. The only way to fix that is to put on social pressures through social media. That’s one of the more effective ways that could be used to fix it. Putting more social pressure, shaming, and spelling out the danger to people that aren’t really getting it. All they can see is I have to pay rent, I have to pay these bills. And in their position, their backs are against the wall. They’re facing, ‘do I give up everything I’ve worked for my life? Or do I try this? And it may be dangerous, but who’s really to say’. And so I understand both sides. And I think that ultimately from looking outward in, I don’t think anyone should be forced to work in a dangerous indoor environment right now, especially when guests are not wearing masks for whatever portion of time they’re choosing to eat or talk. 

KA: How can businesses be better safe spaces for employees who have this fear? 

AG: Open communication is something that I believe in. When I’m first meeting an interviewee, I tell them the pluses and negatives of work in my business. We want to make sure it’s a good fit for you, we want to make sure it’s a good fit for us. No one should have to be in an environment that is not a happy environment for them. Because it’s not going to produce a good product from the business’s standpoint, and the person is not going to be fulfilled. I think that discrimination is everywhere. A lot of businesses struggle to survive and the ones that are doing very well use discrimination as a business tool to make more money. But I think it’s a hard thing to say, it’s a case by case basis. And it’s based on a moral code, a code of ethics that every individual has; and that’s a society issue. There’s going to be, all over the world and in this country especially, tons of racism, tons of discrimination. They hear medical disease and an employer’s gonna say, ‘Look, I’m gonna make a choice. I’m gonna pick the person that doesn’t have a medical disease.’ It’s not the end of the world to have some workers with Sickle Cell as long as everyone’s communicating and being clear about their needs and the issues. Most businesses should be able to respect that and mitigate those issues to the best of their abilities. I’m looking at the value of the person and what they’re bringing to the table. If they’re overall great employees, that’s much more valuable than a once in a while hiccup that is out of their control. 

KA: How have you and your business been holding up through the pandemic?

AG: We’ve been doing all the various pivots you see everyone else doing from online zoom cooking classes to trying to sell meals. But we’ve been doing semi-regular small incidents like a party in someone’s home where it’s just family. We won’t do any public events and we’re keeping the numbers pretty low. We’re doing some outdoor events in people’s backyards, we did a micro wedding for 50 people outside. It’s just enough to pay the bills and keep our employees at work. And that’s how it can be for a bit until we see something else as far as the vaccine or federal intervention. 

KA: As we know, discrimination during hiring is a very real practice. Something many SCD patients, women, and people of color deal with regularly. How do you avoid these problems when hiring staff?

AG: Well A, that’s just discrimination. I’m pretty sure that’s illegal to some extent. B, I think that’s morally wrong. Whenever you’re trying something new with somebody you say, ‘hey, listen, let’s see if it works. If it doesn’t work, we’ll figure it out’. He [Earl] said he’ll do his best to communicate with me when episodes are happening. Then I came to realize, you’re not going to have time to give someone notice or make the phone calls. Maybe the pain is just overwhelming or mind-numbing and just takes over. I think for someone that has to have a job they need their employer to understand this is reality. If they don’t communicate it with their boss, they risk having a [pain] episode and risk that job because no one knows about it. I think that there are probably lots of young professionals out there that have to face that choice. 

KA: Many with chronic illness often won’t bring up their disease out of fear of discrimination, even if they feel comfortable — they might still be seen as a liability.

AG: They have every right to be afraid. They should be afraid. There’s discrimination everywhere. So they should be fearful of that. I may be a different case than the average person looking to hire. I run a very small business, and it’s people-oriented. So I pick and choose, try to find positive people that are putting out positive energy into the world to surround myself with. I look for passionate people, people that care about what they’re doing. I think that Sickle Cell is unfortunate, but it’s hard to find anyone without their issues in life or their problems that they have to deal with. 

KA: In your opinion why is it crucial for smaller businesses to make these pivots during the pandemic? Take for instance your online cooking class.

AG: Every industry is a little different from the pandemic. The restaurant and hospitality industries are suffering in a way that is unique to itself. Business owners by definition are going to be scrappy survivors. They’re taking the initiative to create something from nothing. They’re gonna find ways to survive. But then again, some industries like the restaurant industry are overly bloated and it has been for some time. While you’re seeing restaurants closed down for good and shut the doors right now, before the pandemic this industry was going to hit a bubble-bursting moment. For so many reasons the model just wasn’t working. Pay discrepancies between the front and back of the house, tipping wage is a form of discrimination and racism, there are so many issues with the industry that this could be looked at as a blessing or silver lining years from now. You’re seeing a very fierce fight right now between owners that just want to survive and can’t see the full distance of this pandemic. The indoor seating option, which a lot of people, myself included would say is a mistake. There is a sort of natural selection in the business growth and to have the legs to carry it through situations. It’s a very confusing, very upsetting situation for a lot of people out there that have put their livelihoods and all their savings into creating something and then losing it. It’s hard. 

KA: Would you accredit innovation to keeping yourself afloat during these times? 

AG: As far as where innovation really came from, today the changes we’re making are constantly just brainstorming what else we can do that’s different and might make money. We were just thinking the other day, what if we can get a movie screen and get a good projector; we can rent out a lot somewhere and have a portable pizza truck and bar. Through a collaboration with 13th Street Cocktails, Aaron Gordon who owns 13th Street is an amazing guy who builds custom bars and custom wooden pieces. In this case a mobile pizza bar. We’ve been doing micro weddings with it, but I feel it’s underutilized. So, how can we better utilize this pizza truck? Maybe come into neighborhoods and have a neighborhood buyout where it’s pizza and drinks for an hour. Innovation comes from necessity. Innovation comes from a hole in a market. There isn’t an industry [where] there’s no area for improvement or evolution. 

KA: Once we’ve moved beyond the pandemic, what do you want the culinary industry to look like?

AG: Post vaccine and when things potentially could go back to normal, I think that the wage gap between both front of the house servers and back house cooks needs to be adjusted and fixed. Servers relying on tips, that needs to go away. We need to figure out how to get rid of the tipping model and make sure people are getting a livable wage, which starts at $15 an hour minimum. I started my business back in 2013, paying people $15 an hour to start for prep, and for service, starting people at $20 and ranging up to $30. In some cases higher per hour, but we tip evenly across the board so everyone who’s worked in an event or involved with an event gets the same amount of money as everyone else. It’s a way that people get a good livable wage. I kind of built, to the best of my abilities, as high a pay rate I can handle for business. As far as restaurants are concerned, the tipping model is never going to work. Enforcing what I call a COVID tax. Put it on the state, put it on the government, but that money needs to go evenly to all the employees. There have been countless examples in every city, Philadelphia included, of chefs, owners, and managers being called out by employees for bad practices which is fantastic. That’s exactly how this gets fixed. 

KA: Why did you want to partner with the Crescent Foundation?

AG: We do a certain amount of charity events every year for various groups. I was actually surprised, it wasn’t out of the blue, but I thought it was great that they felt what we’re doing was so interesting. We’re happy to be a part of this. So when we got a chance, we talked on a zoom meeting and they [Crescent Founders] gave me a whole presentation and explained what Sickle Cell was in a way that I don’t think I ever really understood, and the impact it has both on the local community here in Philadelphia and around the world. It painted a different picture for me. 

As we move out of health and wellness week, Alex is a physical reminder that health and wellness is an internal journey we all have to find in our own time. To learn more about Alex and Balboa follow his page on Instagram here, and follow Crescent Foundation for all things adult SCD related here.