Greenwood, SC – Kavi Gandhi, 17, a rising high school senior from West Chester, PA, is already an award-winning patient advocate and foundation executive.
This summer, he’s also an intern in Dr. Richard Steet’s research laboratory at the Greenwood Genetic
Center working on a project to identify potential treatment approaches for a rare genetic disorder known as Mucolipidosis II (ML II).
Gandhi’s drive and accomplishments have been directly influenced by ML II. His older brother, Yash, was diagnosed with the ultra-rare genetic disorder
at just 11 months of age. ML II is a hereditary metabolic condition that causes difficulty in walking, life-threatening respiratory infections, joint
stiffness, and abnormalities of the heart. Yash passed away just shy of this 9th birthday, and his parents, Ash and Sonal, started the Yash Gandhi Foundation,
vowing to fight this disease so that other families would not have to endure such a devastating loss.
Gandhi began his official role with his family’s foundation as Development and Communications Coordinator at age 13. Since that time, he has taken on primary
leadership for most of the Foundation’s activities including fundraising events, social media, and connecting families and scientists. At just 15,
his passion and dedication to the ML II community earned him the prestigious designation as the 2018 Global Genes RARE Champion of Hope.
During his seven-week internship at GGC, Kavi has studied the
history and early research on ML II and has worked closely with staff in GGC’s Research Division to gain hands-on experience with the use of cell and
animal-based models to study the disease process. His final week at GGC is being spent focusing on proposed therapies.
“I first met Kavi and his family in 2017 when I attended their Foundation’s fundraiser in PA,” shared Steet whose laboratory has received funding from
the Yash Gandhi Foundation for the past five years, including a recent $65,000 grant that is supporting work to identify genes that, when activated,
can modify or correct the cellular abnormalities that are seen in patients with ML II.
“I’ve been so impressed with Kavi’s enthusiasm and dedication, and I believe he is poised to be a superstar advocate for rare diseases in the future,”
added Steet. “My hope is that we have now also stoked his interest in pursuing a career in research through this summer experience.”
“I always knew that the support our Foundation gave to researchers like Dr. Steet was important and powerful, but I had no concrete picture of what that
meant,” said Gandhi. “Getting to spend time in the GGC labs and witnessing with my own eyes the important and revolutionary work that is being done
has been indescribably gratifying.”
Gandhi plans to pursue biology and business in college. “Seeing how the work I have put into fundraising manifests itself at GGC and knowing that I played
a small part in the advances that are being made as we speak makes me very proud.”
Top photo: Gandhi learns how to collect zebrafish eggs for further study at GGC’s Allin Aquaculture Facility.
Bottom photo:Gandhi prepares zebrafish embryos for genetic testing to determine if they carry the ML II mutation.
About the Yash Gandhi Foundation
The Yash Gandhi Foundation is committed to raising awareness, building patient advocacy and sustaining research efforts into finding a cure for Mucolipidosis II (I-cell disease). The Yash Gandhi Foundation is a registered 501(c)(3) not-for-profit organization. All contributions are 100% directed to fund research for ML II. www.ygf4icell.org/