The ACP team is now 10 members strong! The CAFE-MS clinical trial is scheduled to start in spring 2024, and we’ve added two new staff members to lead this effort. Last month we introduced you to Jennifer Hill. This month, we extend a warm welcome to Grace Okafor, the Clinical Trial Manager for the study.
Grace was born in northern Virginia and currently lives in Maryland, having spent her entire life in the DC metro area. She is the youngest of 5 sisters. Grace studied epidemiology at the University of Rochester for a year and then transferred to the University of Maryland College Park (UMD), where she earned her bachelor’s degree in Community Health.
“UMD has a very strong public health program. I was very fortunate to work with some pretty great researchers as my faculty and staff. It was there that I got first-hand exposure to research, doing IRB (Institutional Review Board) and human subject research.”
Grace enjoys sculpting in her free time. She shares, “My entire life has been art-related. I went to a visual performing arts high school, so I learned many of the different types of mediums that you can dabble in. I got to a point where I wanted to be more intentional about engaging in creative play outside of work, because it’s something that really brings me joy and makes me very happy. Portrait sculpture is something that I never learned. So, I enrolled in a sculpture class last fall. I work in the studio with clay. I work from models that have already been created, which is the traditional way of doing portrait sculpture. Eventually I want to build a portfolio of work, of sculptures.”
I speak two languages. My mom is from Kinshasa, the largest French-speaking city in the world, and speaks French fluently. I went to a French immersion school in Maryland for 9 years and was taught all of my subjects in French.
Much of Grace’s professional experience has been in the nonprofit space. In her words, “In college I was interested in medicine and healthcare, public health, but also in sustainability, the environment and environmental health. I worked at a nonprofit that was focused on work and climate justice, how do we serve people on the planet in ways that are mutually beneficial. Making sure we are prioritizing the health and wellness of people on the planet. I did some really interesting work trying to get people’s perspectives on how to subvert business as usual to make sure it’s not only for the bottom line or shareholder profit. How do we integrate that ethos of serving people on the planet into the mission of businesses and corporations that have the most power and impact. I organized a mini podcast series, interviewing people that worked in government, angel investors and the like. I got to talk to some really interesting people…Being able to produce something like that is kind of reminiscent to me of being an artist. You put so much work into something, then you let the world see it and judge it. It was my very first time doing something like that, it was really fun.”
I care about organizations that are about serving the communities that they want to help and want to work with.
Grace’s most recent role prior to ACP was with Johns Hopkins School of Nursing, working on two clinical trials focused on health equity and serving underrepresented communities. She states, “I find joy in thinking about the processes and systems behind the scenes. I find monitoring evaluation and learning work very interesting and wanted to get back into a role that focused more on that with nuggets of engagement with participants in a research setting. That’s how I found myself moving into this role as a clinical trial manager. I think it’s the best of both worlds with thinking about systems, thinking about processes, but also thinking about what is the public facing engagement going to look like, interacting with those people and soliciting their feedback to better serve them.
For me, it was wanting to go into a role that was thinking about how are we improving the quality of life for a community that really needs someone to back them and support them.
When asked if she has a personal connection with MS, Grace shares, “I don’t, but I do have a personal connection to other chronic conditions affecting quality of life. My sister and I both suffer from chronic conditions, which is the reason I was motivated to go into public health. It makes sense that we both went into healthcare because we understand how it affects your quality of life, it affects your mood and willingness to do things… These are the things that we don’t ask for. No one asks to not feel healthy, not feel their best self.”
I’m fascinated with emerging technologies and their capacity to help inform treatment. I feel like a lot of people are afraid of AI (Artificial Intelligence), afraid of technology and things like that, but I’m so interested in the good that it can do, rather than dwelling on the bad.
Grace initially learned about ACP through her job search. She shares, “When I came across the role, I was very interested in learning more about what the organization does. The trial I was working on at Johns Hopkins was also doing a remote monitoring program, working with an application. I’m excited to see ways we’re using technology to literally transform lives and transform how people are moving through the world and are able to have more support.”
What inspires you most about ACP’s mission? “Having the input of people living with MS is invaluable in the process of finding a cure. I don’t think we understand the power there is to have that kind of community-based collaborative research. I think that’s something that’s super special about ACP.”
How do you think your gifts and skills will contribute to the CAFE-MS clinical study? “In clinical trial roles, you are managing relationships, negotiations and competing priorities. I think being able to break those barriers and get to the root of what is it that we are all seeking out of this venture is something that I will be able to apply. Just that focus, trying to get people in alignment with what needs to be done so we can realize this goal and this effort.”
What are you looking forward to most about managing the CAFE-MS clinical study? “Getting people enrolled and seeing if their fatigue improves because of the treatment. I’m just excited about the impact. What a huge difference this is going to make for people with MS!”
What do you think your biggest challenge will be? “The regulatory requirements will be tricky. Conducting a trial of this size virtually at a combination of sites could be, too.”
We’re thrilled to welcome Grace as part of the team leading the CAFE-MS clinical study. If successful, this research could result in a practical and effective treatment for MS fatigue that is FDA-approved and covered by insurance in the U.S. This would be a major advancement for people with MS and their healthcare providers. More to come!
