Meet the four winners who’ve demonstrated dedication to the advancement against a rare or chronic disease either through research, patient advocacy, raising awareness, or community building.
The first time Daniel Stanley recalls witnessing his younger sister having a seizure he was 5 years old.
"She’s 18 now, and I’ve seen her have hundreds, maybe even thousands, of seizures throughout her life,” the 20-year-old junior at the University of Wyoming tells Healthline.
Although his sister Emily had her first seizure when she was 6 months old, she didn’t receive a diagnosis of Dravet syndrome — a lifelong form of epilepsy — until she was 5.
Watching Emily manage her condition inspired Stanley to seek a degree in biology and to apply for the Healthline scholarship.
We asked Stanley about his studies, goals, and obstacles. Here’s what he had to say.
This interview has been edited for brevity, length, and clarity.
What prompted you to get into your field of study?
I want to make a difference in the lives of children by finding a cure for intractable epilepsy through scientific research.
Even before I knew I wanted to do something in the field, I knew I wanted to help with epilepsy. Anytime Emily has a seizure, she needs her medicine to stop it if the seizure doesn’t stop on its own. When I was younger, I wasn’t comfortable administering the medicine like my older sister was, but I still wanted to help. So, I tracked the time of each seizure so we could know how long each one was and when to administer the medicine. At a young age, I took on small responsibilities and as I grew older I was taught how to administer the medicine. The first time I administered Emily’s medicine I was 13 or 14 years old. My desire to help with this disease grew as I got older.
What are your future goals pertaining to Dravet syndrome?
I currently double major in biology and environment and natural resources. When I graduate I want to go to grad school to get a master’s degree and perform research.
I want to make a difference in epilepsy, whether it’s working with drugs or a new system or mechanism that’s not understood — anything to progress the understanding of the disease.
Since my freshman year of college, I’ve worked in an epilepsy lab doing basic research. My work there is volunteer and I don’t get credits, so the [Healthline] scholarship will help me financially through school. At first, my boss was nice enough to fund me out of his own pocket, but then I got funding from programs like the undergraduate research program and the Wyoming Research Scholars. The time I put in at the lab is something I want to do to help epilepsy. Plus, it’s helped me realize I want to do more work that focuses specifically on this disease.
What obstacles do you envision encountering, or have you encountered, as you move toward your goal of finding a cure for epilepsy?
Early diagnosis is a challenge and it would’ve really helped my sister in so many ways. My sister was 5 when she was first diagnosed. It wasn’t because her disease changed that she was able to receive a diagnosis. Instead, what was understood about the disease changed.
For example, my sister was on a diet for years that was supposedly really good for kids with Dravet syndrome. Then a study came out that reported the diet was actually bad for kids with the syndrome. There’s lack of understanding and research about Dravet.
I do, however, think research and awareness is improving, and I’d like to help keep up that momentum. As a child, I always wanted to know what was happening with my sister. When I looked up the syndrome, however, there was misinformation about mortality rates and it scared me. Today, we’ve come to find that it’s a disease that can be managed.
What message would you like to give to those within the Dravet syndrome community?
My family was recently at a Dravet Syndrome Foundation conference where my older sister and I were part of a panel of siblings of Dravet patients. Parents in the audience asked us questions about being a sibling to a child with Dravet. The parents’ main concerns revolved around whether or not they spend enough time with their children who don’t have Dravet because of the time required to help their child with the condition. They also wanted to know whether, as a sibling, we feel guilty being healthy and needing attention from parents too. I admitted that it’s hard to be a sibling sometimes and that it’s important to make time for all the kids in the family.
I also brought up how it’s important to talk with your children about how much responsibility they want to take on when it comes to their sibling with Dravet. It’s also important to find out how much interest they have in the disease. I learned that every sibling is different. While I was working at a kids’ camp where parents would send their children without Dravet, I found out that some of the siblings wanted to help their sibling with Dravet. There were some, however, who said they wanted to leave the room when their sibling had a seizure because they didn’t want to see it happen. My point is that neither way is right or wrong, but it’s important to talk with your children about how much they want to take on. Also, understand that their feelings may change as they age.
Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.