Legacy in action
With Kaya Girl Legacy, partnerships are the heart of our mission. By collaborating with leading organizations, advocacy groups, and health institutions, we amplify our voice and drive real change in genetic health and rare disease awareness.
Featured Organizational Recognition
Establishing Kaya Girl Legacy within the global rare disease advocacy ecosystem
National Registry
NORD — Organization Listing
Kaya Girl Legacy is officially recognized by the National Organization for Rare Disorders (NORD) as a trusted rare-disease patient organization. This listing establishes our formal presence within the national rare disease framework, validating our dedicated efforts to support families, raise awareness for SPLIS, and advocate for equitable newborn screening.
Summit Report
American Kidney Fund — Patient Access Initiative Summit Report
This summit report highlights Dr. Yojana Rodriguez-Humbert as Founder and Executive Director of Kaya Girl Legacy following her featured address. The publication captures her impactful testimony regarding newborn screening gaps, managing genetic uncertainty, the necessity of early diagnostic testing, and the urgency of centering patient voices in healthcare reform.
Core Landmark
Labcorp — Kaya’s Featured Patient Story
Labcorp featured Kaya’s story as a hallmark example of diagnostic impact and family-centered care. This story directly connects Kaya’s diagnostic journey, initial genetic testing, vital information on SPLIS, our family’s lived experience, and the founding of Kaya Girl Legacy to illuminate the path for other families facing rare diagnoses.
Professional Impact
Labcorp — LinkedIn Feature & Community Response
Labcorp publicly showcased Kaya’s journey across its national healthcare and diagnostic network, sparking widespread professional engagement. This feature illustrates the vital bridge between diagnostic laboratory pioneers and patient-led foundations working together to champion early genetic testing.
Organization Profile
Know Rare — Organization Spotlight
Labcorp featured Kaya’s story as a hallmark example of diagnostic impact and family-centered care. This story directly connects Kaya’s diagnostic journey, initial genetic testing, vital information on SPLIS, our family’s lived experience, and the founding of Kaya Girl Legacy to illuminate the path for other families facing rare diagnoses.
Authored Article
Know Rare — Authored Patient Story
Written directly in Dr. Yojana Rodriguez-Humbert’s personal voice, this moving account details Kaya’s diagnostic journey, her enduring purpose during her brief time on earth, and the undeniable calling that led to the founding of Kaya Girl Legacy as a beacon for other parents navigating rare disease.
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Diaspora Advocacy
Caribbean POSH — Feature Profile
This feature highlights Dr. Yojana Rodriguez-Humbert and Kaya Girl Legacy’s vital position within Caribbean and diaspora health advocacy. The article explores our initiatives to address health equity, expand access to newborn screening, promote genetic health literacy, and empower underrepresented communities.
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Founder Profile
VoyageMIA — Founder & Advocacy Profile
VoyageMIA published an in-depth profile chronicling Dr. Yojana’s personal and professional journey. The interview covers Kaya’s story, the courage required to confront rare pediatric disease, and Dr. Yojana’s inspiring transition from a grieving mother into a leading national advocate for genetic health.
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Through Kaya Girl Legacy, we believe that awareness and advocacy go hand in hand with research. Our collaboration with Save Our Cures, through fundresearch.org, is dedicated to accelerating rare disease research and promoting equitable access to innovative treatments.
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Together, we work to ensure that families impacted by rare diseases like SPLIS have hope for the future. By combining the voices of patients and advocates with the strength of scientific research, this partnership amplifies the urgency of funding innovation and driving policy change.
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This joint effort represents a crucial step toward a world where no family feels left behind in the search for answers and cures.
Diagnostic Science Partnership
Bringing the Family Voice into Diagnostic Science
"Kaya Girl Legacy brought the lived experience of rare disease into two powerful conversations with Quest Diagnostics. From regional operational leaders to scientists and researchers at the R&D Science Forum, Dr. Yojana Rodriguez-Humbert shared the human story behind every specimen, every variant, and every result. Her presentations connected diagnostic science with the families waiting on the other side—reminding attendees that every blood sample represents a child, every variant belongs to a family, and every discovery has the potential to change generations."
Executive Leadership Address
Quest Diagnostics Customer Obsession Presentation
Dr. Yojana presented to Quest Diagnostics’ Southeast regional leaders, bringing raw humanity to technical laboratory operations. She shared the agonizing anxiety experienced by families during late-night waiting periods and articulated the profound real-world impact behind every specimen tube, earning deeply moving endorsements from executive leaders.
Scientific Keynote Speech
Quest Diagnostics R&D Science Forum Keynote
Delivering a keynote address titled “Silent Codes, Loud Futures: Sequencing Every Newborn” to Quest’s top scientists and researchers, Dr. Yojana connected genomic sequencing directly to clinical humanity. Her address triggered emotional reactions across the auditorium, reconnecting researchers with their core calling.
Medical & Research Contribution
Kaya’s Legacy Is Now Part of the Scientific Record
Through collaboration with Stanford University School of Medicine’s Project Starfish, clinical evidence from Kaya’s journey was submitted to ClinVar, an international database used by laboratories, researchers, genetic counselors, and physicians worldwide. Future families who encounter Kaya’s SGPL1 variant will now have critical evidence that was not available when our family first received results.
Genetics in Medicine Open
Peer-Reviewed Journal Publication
"When the Newborn Screening Works: And Why the System Around Families Must Still Evolve" — A published peer-reviewed article analyzing the critical evolution required in post-diagnostic family support systems.
Stanford Project Starfish
ClinVar Variant Data Submission
Documenting Kaya’s genomic and clinical evidence to assist clinicians, medical geneticists, and researchers worldwide in accurately interpreting SGPL1 gene variants.
Genetic Education & Awareness Collaborations
Grassroots education campaigns and community initiatives driving early testing conversations
Facebook Story
Start Genetic
Action Day Feature
A featured community narrative shared across Facebook for Genetic Testing Action Day, highlighting Kaya’s story to illustrate why prompt genetic testing is essential for early diagnosis.​
Instagram Campaign
Start Genetic
Visual Campaign Spotlight
A featured community narrative shared across Facebook for Genetic Testing Action Day, highlighting Kaya’s story to illustrate why prompt genetic testing is essential for early diagnosis.​
Community Spotlight
Start Genetic
Meet Dr. Yojana Rodriguez-Humbert
An inspirational story published by Start Genetic detailing Dr. Yojana's commitment to early diagnostic access and empowering families with actionable health knowledge.
Resource Collaboration
Genetic Health
Conversations Start at Home
Start Genetic publicly thanked Dr. Yojana on LinkedIn for building family genetic health guides, emphasizing how proactive conversations at home lead to earlier diagnosis.
Media & Storytelling
Podcasts, features, and historical archives carrying Kaya’s light forward
Podcast Interview
One of 46: A Mother’s Story of Love, Loss, and SPLIS
A deeply moving podcast conversation exploring faith, surrender, Kaya’s legacy, and the emotional path to finding purpose after heartbreak. Dr. Yojana shares how love and spiritual resilience fuel her ongoing mission for rare disease advocacy.
Personal Profile Narrative
Seen Stories — 'My Baby’s Organs Are Failing'
A raw, honest account capturing the critical days of Kaya’s hospitalization and acute multi-organ failure. This narrative sheds light on the rapid progression of SPLIS and underlines the urgent imperative for swift genetic diagnosis.
Historical Archive
Help Honor Our Kaya Girl’s Precious Journey
A testament to community solidarity, this archive documents the original wave of love, prayer, and support that rallied around the Humbert family during Kaya’s hospitalization, marking the foundational roots from which Kaya Girl Legacy grew.
Featured Reel
Stanford Medicine & Kaya Girl Legacy Reel
An inspiring short-form video reel capturing our collaboration with Stanford University, highlighting the power of patient advocacy in scientific innovation.