Changemaker in Rare: Jeremy E. Lankford, M.D.
To truly understand the intricacies of a rare disease, it takes a rare type of doctor. Get to know the specialists who are at the forefront of rare disease research with our series, Changemakers in Rare.
Jeremy E. Lankford, M.D., Pediatric Neurologist
At only four years old, Jeremy Lankford already knew that he wanted to be a neurologist. Today, that dream has come true, but what makes that reality even sweeter for the now-veteran physician is that his expertise is focused on improving the lives of kids just like that young version of himself. Dr. Lankford is the former director of the child neurology residency program at UT Health Houston, where he specializes in pediatric epilepsy. He also treats patients in the child neurology and pediatric epilepsy units at Houston’s nearby Children’s Memorial Hermann. Read on to find out what makes Dr. Lankford especially passionate about pediatric neurology, and what gives him optimism when he looks at the future of rare disease.
Q&A with Jeremy E. Lankford
What led you to pursue your field of study?
Initially, my interest in neurology came from my mom. She had MS, and she tells me that when I was four, I told her that I wanted to be a neurologist when I grew up. Many years later I found out that there was such a thing as pediatric neurology, and it was just a perfect fit. I love being around children, I love helping families, and so child neurology has really been the field I’ve been angling towards my entire life. As far as epilepsy: epilepsy sort of brings in the opportunity for cure in neurology. And a cure is something we don’t get to say a lot in neurology, or in medicine in general. And so being a pediatric neurologist, seeing epilepsy, seeing the opportunity for cure, and seeing my devotion to patients, really there was no other way to go.
What do you find to be the most rewarding part of your work?
I really enjoy working with the patients: the way they look at life, the way they look at their own illnesses, the way they sometimes forget their own limitations—I think that’s really helpful. And the families as well. You know, we see a lot of patients who have been to multiple different centers, who have seen multiple different physicians and either haven’t come up with a diagnosis or don’t have a great plan. Being able to provide something for that family, even if it’s not ultimately a cure or something that we actually want, being able to shepherd in any way, and assist in any way, I think is the most rewarding part.
Where do you see rare disease research going in the next few years?
I think that you’re going to see a real integration of engineering science with medical science. You’ve already seen it in how we evaluate diseases, and I think you’re going to see it a lot more in the management side: how we deliver medications, long-term medications, providing specific mechanical devices that help patients use certain aspects of their body that we thought they couldn’t use anymore. I really do think that engineering is going to be tied in tight with medical advances, and that’s where we’re going to make our biggest steps.
As a former residency director and someone who has been a longtime clinician, you’ve recently moved into research. How do you feel about being in the research arm?
I think research is really just describing to people what you see daily. Our job is to educate as much as possible about what we’re seeing, and what we’re doing, and as we educate, we can actually advance. There are certain aspects as a researcher, as a clinician, that I have a lot of exposure to, but there are some that I don't. And so as much as I can tell others about what I’m doing—maybe I can pique someone else’s interest, or maybe there’s something they can do, and we can come together—and with those collaborations, I think, is where you’re going to see the biggest advances.
Latest From Know Rare
From prenatal uncertainty and postpartum anxiety to therapy, grief, and hope, a mother shares her experience raising a child with a rare disease, navigating the healthcare system, finding community, and learning to embrace a different—but deeply meaningful—path as a parent.
A Danon disease study, led by researcher Dr. Barry Greenberg and published in the New England Journal of Medicine, wins an award! The study focuses on gene therapy as a potential treatment option for Danon disease. The study showed early signs that gene therapy may help the hearts of people with Danon disease.
A poster, presented at the European Hematology Association meeting in June, described a study that looked at tiredness (fatigue) in adults with immune thrombocytopenia (ITP). Researchers wanted to see if fatigue was related to bleeding or other health test results.
Lucky Shanmugan was recently featured in Porter Ranch Living, his local magazine, for Father’s Day: in his interview, Lucky talks about Osteogenesis Imperfecta, a rare genetic or heritable disorder of the connective tissue, and the incredible journey towards his official diagnosis.
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
A family’s hardships and resilience in finding answers and getting a diagnosis for their child, after numerous tests, brain biopsies, and hospitalizations. And the relief but also grief in finally putting a name to the rare disease that affects their child: BCL11B-related disorder.
The Danon Foundation boldly empowers people living with Danon disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources.
For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.
If you’ve been told you have seronegative NMOSD, there’s nearly 50/50 chance you have a different antibody causing your symptoms –MOG antibody.
Therapy Near Me is a nationwide mental health service based in Australia, providing easy access to psychologists, counsellors, behaviour support practitioners and social workers.
At the annual Kidney Week of the American Society of Nephrologists (ASN), the world’s largest kidney healthcare professional organization, new advances in research were highlighted. Over $35 million has been invested in research with the ASN, and there are many treatments in development for IgA Nephropathy (IgAN), with researchers actively investigating more than 20 different drugs.
When I was diagnosed with celiac disease, I thought avoiding bread and pasta would be enough. I quickly learned that living truly gluten-free is far more complex, and I'm sharing my experience to help newly diagnosed individuals understand what lies ahead.
Retinopathy is an eye problem that many people with Danon disease have. It can cause dark spots in the outer part of the eye, blurry or worse vision, and unusual test results on an eye exam. Sometimes these eye changes show up before heart problems, so an eye check can help find the disease early.
A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.
Kaya Girl Legacy, Inc. is a Florida-based nonprofit founded in memory of Kaya Humbert, a beautiful baby girl born with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), one of 46 known cases worldwide. The foundation is dedicated to empowering families with knowledge about their genetic health and advocating for early access to genetic testing and rare disease awareness.
A prose poem by Jim Kuhn, a rare warrior living with Sarcoidosis, a rare inflammatory disease.
Rare Mom Laura shares how her family’s prep for Halloween turned into a burst of familial love and creativity, as they all worked together in designing and building a costume for Alden, her medically complex son.
Instead of starting with a newly discovered drug compound, PCOR is a type of research that starts by turning to patients and caregivers and asking, What matters most to you? What questions do we want answered? What symptoms do we wish were better managed? What keeps us up at night?
Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.
Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue.
Why is it so hard to accept help? Humans often associate help with weakness and loss of independence and control. However, if we reframe our thoughts, accepting help can be viewed as a form of empowerment: showing vulnerability and trusting someone to help us requires great strength.
There is so much mental load with having a rare disease. Rare Human Lindsay shares there are things she does not care about anymore, as she manages rare disease symptoms, specialists, and clinical trials.
Rare Human Lindsay shares her "silver linings." It's not 'what doesn't kill you makes you stronger,' instead it's what doesn't kill you makes you braver. She shares that she has found deeper connections with others, improved her ability to ask for and accept help, and not been as afraid of the word "no."
Journalist and rare disease advocate Lindsay Guentzel breaks down why clinical trials are a lifeline for the rare disease community. With only 5% of known rare diseases having an FDA-approved therapy, trials often represent the only path toward treatment, progress, and hope.
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.