The next generation of researchers are continuously inspiring and fueling NHF’s renewed focus on research. Dr. Shani Johnson is one of the first-ever recipients of the new Jeanne Marie Lusher (JML) Diversity Fellowship.  

NHF’s newest research fellowship program is named in honor of Dr. Jeanne Marie Lusher, a distinguished clinician and researcher whose career focused on inhibitor development in factor VIII patients.  

As a JML recipient, Dr. Johnson will receive financial support over three years that will aid her clinical research. JML identifies clinicians from under-represented communities and genders who are early in their careers and supports their career interest in inherited blood and/or bleeding disorders.  

Dr. Johnson– a third-year pediatric hem/onc Fellow at the Baylor College of Medicine, Texas Childrens Hospital – was chosen for her potential to make a significant, positive impact on the future of patient care. Her passion and excitement about the advances being made in curative therapies for inherited blood disorders are evident in her research on sickle cell disease (SCD).  

Read more from her interview. 


How did you learn of the JML Fellowship? 

One of the postdocs who works in my lab, who's become a really good friend of mine, was actually looking for grants of her own and she ran across the JML fellowship award. And she was like, I think this would be a good fit for you. Initially I was like, well, hemophilia? But we looked at the criteria and inherited blood disorders includes sickle cell disease. I said, you know, let's give it a shot and see what happens.  


How did you feel when you learned you were a recipient of the JML Fellowship? 

Oh, my gosh I was elated! I was really excited to be working on my research in the lab and wanted to continue to do that, you know, after fellowship. One of the ways to ensure that that continues to happen is to have a grant. I was so excited and fortunate to receive the award.  


How does receiving the fellowship impact your research? 

It first allows me to continue to pursue my research and then have the protected time to be able to continue to do that. I've been afforded 80% protected research time and this grant was an important part of that. 

And then, it also allows me to have the resources to continue to investigate my research because this is kind of a new area of sickle cell disease research. The grant really helps me to be able to continue to do that.  


How would you explain your research to a non-scientist? 

I think it's first important to understand that both children and adults with sickle cell disease can develop these episodes of almost like a pneumonia-acute lung injury. 

And we call that acute chest syndrome. It's so common that up to half of patients with sickle cell disease may develop acute chest syndrome in their lifetime. What makes this complication interesting is that it can be very mild, almost like a cold, or it can be a really serious severe complication where you may need to be in the ICU and have ventilator machine to help you breathe and for your lungs to heal. 

At this point, we're not quite sure what molecules and genes in the body make you more likely to have more of that severe type of presentation of acute chest syndrome. The goal of my research is to take a better, a closer, look at the molecules and the genes that may increase your risk of having the more severe acute chest syndrome. 

The overall hope is from what I find in my research, to hopefully be able to do, is figure out which patients are more at risk of that severe type of acute chest syndrome. And then on the other hand, think of ways to create treatments that can reduce the likelihood of you having such severe lung injury. 


What drew you to medicine and hematology in particular?  

It's a long, interesting story, but I will say I grew up in a household with different people in different parts of healthcare. My mom is a nurse and I have a lot of nurses in my family actually. So, I was exposed to healthcare at a very early age, but I think it was in high school where I realized you could have combined science and teaching and just leadership and everything into this one kind of field medicine becoming a physician. 

 I initially went into medicine and started medical school thinking that I wanted to do primary care because I was really interested in eliminating healthcare disparities. I had a lot of different opportunities to learn more about topics like pathology and learn more about sickle cell disease in particular. 

And through those clinical and research experiences, I realized I can still do all of those things I was interested in and also have this focus on sickle cell disease, which is still something that's under researched and underrepresented in terms of focus in healthcare. Fast forward, I decided to pursue a pediatric hematology oncology fellowship, and, now I'm here. 


How does something like medicine help advance the careers of physicians/researchers of color? 

I thought a lot about this question, and I think it makes me think of a couple of things. One, I think that when you think of medicine and being a physician in particular, it's not just diagnosing patients and treating them. You have this opportunity to be a teacher, a mentor, an advocate, not only for your patients, but those who are thinking about pursuing science and medicine. It gives you the opportunity to be able to show like, hey, you can do this too.  

Then it also, for those who are coming along, who want to pursue more of the research who want to do more leadership roles, it gives you the opportunity to encourage others to pursue their dreams. I think medicine is a beautiful way to be able to do that. I'm very thankful for the mentors and role models I've had because I think they really did help contribute to why I've made it this far.  


Why is it important to give a voice to professionals of color in medicine/science?  

I kind of alluded to representation really does matter. When you see or hear someone who looks like you doing some of the things you're interested in doing, it just gives you a lot more inspiration and encouragement that you can do it. There are people who can help you along the way to be able to get there through their own experiences. 

And then I think on the other hand, I think this is why diversity is important because you can give different perspectives and see things in different ways. I think all of those things having diverse perspectives have allowed us to be able to think about clinical questions, think about research questions in a different way. 

And I think it's contributed to creating this significant impact on the way that healthcare is changing and evolving.  


If there was one piece of advice you could give to anyone thinking of applying to the JML Fellowship, what would you say? 

I would say, go for it. I think for me initially, like I was mentioning I'm working on sickle cell disease research and initially I was like, oh, the Hemophilia Foundation would they even be interested in my project? 

It was very exciting to see that there was so much interest. I will say if you like, look at the criteria and it even somewhat applies to you just go for it. Especially if you have a project that you're excited about and you have a team that's willing to support you. I say, go for it. 


Is there anything else you would like to add? 

You know, I just want to mention again, I'm so thankful for the opportunity to have this fellowship award. I have wanted to be a physician scientist, at least since residency. And just thinking about ways to continue to have the support to do so because this is kind of new territory for me. 

NHF has, has been able to be the first grant that really is going to support me to be able to continue my dreams and hopefully make a significant impact on my patients. 

 Watch Dr. Johnson's Q&A video here: