Name: Nikita Sivakumar
From: Alexandria, Virginia
School: Thomas Jefferson High School for Science and Technology
to the Patients.
hated that there was absolutely nothing I could do to help her.
cure was simply to “wait”
my mom suffered from an unusual headache coupled with vertigo and
nausea. I had never seen my strong-willed mother shed a tear out of
personal pain. The ground underneath me shattered, as I saw the woman
who gave up her job and education to raise me reduced to a pale
patient in the white rooms of a hospital wing.
my mom experiences vertigo, I feel an overwhelming sense of
helplessness. There is no effective treatment for her condition. In
the aftermath of one of my mom’s first episodes, I resolved to
reduce the uncertainty families face against such medical conditions.
Throughout high school, I dedicated my free time to volunteering at
patient advocacy groups for rare diseases.
the summer of my sophomore year, I volunteered at Monochrome Man
(MM), which focused on raising awareness for a genetic eye disease,
Blue Cone Monochromacy (BCM). Since BCM is so uncommon, most
optometrists misdiagnose patients, resulting in generations of
insufficient treatment. Spending 18-20 hours a week, I poured myself
into the organization. As the head of communications for the
non-profit, I directed a team to develop medical brochures that
informed patients and eye specialists about BCM. Additionally, I
worked with my internship director to develop a research proposal for
BCM gene therapy. My efforts laid the groundwork for preventing
misdiagnosis of patients and finding a cure for the disease.
interacting with child BCM patients and their families, I witnessed
firsthand the immense struggles they endured. These children faced
bullying for wearing large magenta glasses (specially-made glasses
for BCM patients) and developmental challenges due to the early lack
of vision. The experience taught me to be grateful for what I had,
and motivated me to continue giving a voice to those with rare
diseases throughout my professional career.
my work with MM continued, my internship director and I sought to
expand the outreach of our patient advocacy group through founding
PatientsLead, a non-profit that provides a platform for patients and
other interest groups to collectively pool investments towards
research for a specific disease. The approach is both unique and
sustainable, making it forward-looking. Every week, I spend 2-3 hours
on my PatientsLead responsibilities of organizing meetings with
potential investors and designing outreach material for target
audiences. The biggest challenge I faced at the start of this
endeavor was directing public attention towards our organization. How
do I market our ‘patient-led drug development’ model? However,
soon through persistence, I secured our very first meeting with an
investor. From there, we have been able to slowly build the
take pride in my volunteerism because it empowers families, like my
own, by giving them the opportunity to find a cure for their
condition. Twenty years from now, I believe that PatientsLead, along
with other such organizations, will help cure all rare diseases.