For Lakeia Nard, the fight for children with rare diseases is deeply personal. Her son, King’Nazir, was diagnosed with and later lost his life to a rare neurodegenerative disease. Nard said despite her tireless efforts to find answers and support, she faced overwhelming barriers in the healthcare system — ones she said disproportionately affect children of color.
Determined to turn her grief into action, Nard founded Melanin Children Matter Inc., an organization dedicated to ensuring that no family walks the same lonely path she did. Now, through the Black & White Gala: Rare Disease Day on February 27, she hopes to bring the Owensboro community together to raise awareness, fund critical research, and build a future where every child — regardless of race or background — has access to life-saving medical care.
The gala, organized by Melanin Children Matter Inc., will bring together advocates, researchers, families, and community members to raise awareness and funds for rare childhood diseases, particularly those affecting children of color.
Nard said Melanin Children Matter Inc. is dedicated to bridging gaps in healthcare, providing resources for families, and advocating for racial equity in medical research and treatment.
“Melanin Children Matter Inc. is dedicated to servicing children, healing families, and educating society while enhancing awareness surrounding childhood rare diseases and resources for autism,” Nard said. “We want to ensure that no child is overlooked due to their race or socioeconomic status.”
The Black & White Gala was born out of a desire to create a platform where advocacy meets action. Nard said rare diseases, particularly those affecting underserved and rural communities, often go unnoticed, leaving families with limited resources and support. The gala aims to shine a spotlight on these stories, raise funds for research, and foster a sense of community around affected families.
“I hope this gala will inspire conversations, foster partnerships, and ultimately lead to better healthcare outcomes and equity for all children,” Nard said.
One of the diseases being highlighted at the gala is SPTLC2-related pediatric ALS, a rare neurodegenerative condition that impairs motor function, leading to muscle weakness, respiratory issues, and eventual paralysis. Nard said children of color are often misdiagnosed or overlooked when it comes to rare diseases, making awareness crucial.
“My son King’Nazir was one of the few children diagnosed with this condition, and his legacy drives my commitment to ensuring other families receive the support and resources they need,” Nard said.
The gala will also introduce the Autism Access Initiative (AAI), a program designed to provide early evaluation, assessment, and diagnosis for neurodivergent children, particularly in underserved communities. By reducing wait times and financial barriers, the initiative aims to ensure children receive the necessary educational and social support they need to thrive.
Keynote speaker Dr. Chelsey Carter, an ALS research advocate from Yale University. Her work examines ALS through the lens of social justice and health equity, challenging conventional narratives and highlighting disparities in medical care.
“Her perspective aligns with our mission to address racial disparities and advocate for equitable healthcare,” Nard said. “Having her at the gala not only validates the experiences of families affected by pediatric ALS but also empowers our community to demand better research and healthcare practices.”
The evening will also feature personal stories from families affected by rare diseases, a silent auction, live entertainment, and networking opportunities. Attendees will hear firsthand accounts of resilience and advocacy, ensuring that these stories do not go unheard.
“Honoring my son, along with Greyson and other children, at the gala ensures their stories inspire change and raise awareness,” Nard said.
Looking ahead, Melanin Children Matter Inc. has ambitious goals. The organization is working to expand the National ALS Registry to better reflect children of color, advocate for the inclusion of SPTLC2 in newborn screenings, and build a biobank for rare diseases affecting marginalized communities. Expanding the Autism Access Initiative to more regions is also a priority to ensure every child receives timely diagnosis and care.
“Our long-term vision is to create systemic change,” Nard said. “We want to drive research, policy changes, and community programs that prioritize health equity.”
As the Black & White Gala approaches, Nard hopes attendees will walk away with more than just an evening of fine dining and entertainment.
“I hope attendees leave the gala with a deeper understanding of the challenges faced by children, families, and rural areas in underserved communities with rare diseases and a commitment to being advocates for change,” she said. “This event is about building a movement, ensuring no child is left behind.”
The Black & White Gala: Rare Disease Day will be held at the River Park Center from 6-10 p.m. on February 27. Individual tickets are available for $75, with reserved tables for six or eight guests offering premium seating and recognition opportunities. Businesses and organizations can also contribute through sponsorships, in-kind donations, or direct financial support.
To purchase tickets or learn more about sponsorship opportunities, visit the event’s official page or contact Melanin Children Matter Inc. at [email protected].
“Together, we can turn rare diseases from a life sentence into a cause for hope,” Nard said. “Be the difference. Be the light.”
