Community Advisory Committee

Johnathan Anderson

Johnathan is the parent of a 20-year-old daughter with ADNP and 15q duplication and works as an advanced clinical practitioner in the United Kingdom. This dual perspective gives him a unique view of the healthcare journey, informed by both lived experience and professional practice. He hopes to use his clinical expertise and professional networks to help guide Simons Searchlight research from both a personal and medical standpoint.

Luca Rino Belloni

Luca Belloni is a Strategic Advisor for a group of companies. He is Italian and lives in Italy with his wife, Francesca, and their three children: Tommaso (10), Giorgio (7), and Alessia (6 months). Giorgio has a mutation in the PPP2R5D gene, diagnosed at age 2 through whole exome sequencing. Since then, Luca has been deeply involved with Jordan’s Guardian Angels, working tirelessly to advance research on the disease. In 2025, with crucial support from Simons Searchlight, this research will lead to clinical trials for a potential treatment.

Luca is also dedicated to supporting families affected by the disease, both internationally and locally. In Italy, he is establishing a national branch of Jordan’s Guardian Angels to raise awareness, support families, fund research, and advocate for European approval of FDA-authorized treatments. To achieve this, Luca is collaborating with Italian institutions and encouraging the creation of similar efforts across Europe, aiming for stronger representation in European regulatory bodies.

On a global level, Luca actively engages with the international community of families, both virtually and in person. He is proud and honored to contribute to Simons Searchlight’s initiatives locally, across Europe, and worldwide.

Taylor Coach

Taylor Coach is honored to serve as a member of the Community Advisory Committee. They contribute community perspectives to support ethical, inclusive research practices and value collaboration and meaningful community involvement.

Jessica Joy Cuthbertson

Jessica Joy Cuthbertson is a Colorado native, a 1997 Boettcher Scholar, and a National Board Certified Teacher (NBCT) with 20 years of experience in the field of K-12 education. She has a passion for teaching and supporting readers across all developmental stages, especially students with dyslexia and learning challenges.

In 2019, she left the classroom to focus on caregiving and homeschooling her only son, Henok, earning her CNA and RBT licenses in the process. She also serves as an Education Coach and Homeschool Consultant with Hopkins Education Services, a locally owned tutoring company specializing in serving students with developmental and learning disabilities. She served a two-year term as an Arapahoe County representative for the Colorado Special Education Advisory Committee (CSEAC), and is a 2024 graduate of the JFK Partners LEND (Leadership Education in Neurodevelopmental Disabilities) Program. She serves as a current trained support parent and community ambassador for P2P (Parent-to-Parent) Colorado.

Jessica earned a B.A. in Communication and Sociology from Regis University and an M.A. in Education from the University of Colorado at Denver (UCD). She is a sibling to a sister with vision impairment and developmental disabilities, and the adoptive mother to a son with Coffin-Siris Syndrome (ARID1B gene variant) and related developmental disabilities. Jessica is interested in learning more about advocacy for and with the rare disease community, and supports inclusive solutions designed to build bridges of understanding between systems like law enforcement and public education and the neurodivergent individuals, families, caregivers, and communities they serve.

Sarah Davis

Sarah Davis, PhD is a sterility assurance drug reviewer for the Food and Drug Administration (FDA). She holds a PhD in microbiology from the University of Tennessee and a bachelor’s in microbiology from Clemson University. Prior to her work as a reviewer, she conducted microbial pathogenesis research for the National Institutes of Health (NIH) and later at the University of Maryland. Research at each institution has resulted in peer-reviewed scientific publications in the fields of both bacterial and fungal pathogenesis.

While attending graduate school she met her husband Steve, a microbiology postdoctoral fellow, and together they raise their young daughter Holly. At 23 months, Holly was diagnosed with autism and speech delay. Following the autism diagnosis whole exome sequencing was performed, which revealed that both Sarah and Holly carry a pathogenic variant/ mutation in the RERE gene. RERE-related neurodevelopmental disorders are associated with developmental delays, autism spectrum, and low muscle stone. As a child Sarah also had a significant speech delay, which may be explained by this mutation. The genetic sequencing results have given her family a better understanding of both Sarah’s and Holly’s childhoods. Sarah is happy to join the Simons Searchlight CAC. She resides with her family in Silver Spring, MD and is originally from Florence, SC.

Delf

Delf is a seasoned IT professional with over 20 years of experience and a passion for global cultures. Having lived and worked in countries such as the United States, Argentina, India, and the Philippines, he brings a multicultural perspective to his leadership style. He holds an MBA in Information Technology and a Bachelor of Science in Business Computer Systems.

With a background in cybersecurity, digital workplace solutions, and product management, Delf currently leads teams at a large multinational company, focusing on automation, data analytics, and user experience. He has a proven track record in delivering enterprise-scale solutions and driving innovation.

Delf’s approach is defined by his core strengths: as a Relator, he excels at building meaningful connections; as a Maximizer, he brings out the best in people and projects; his Analytical mindset enables him to break down complexities, and his Achiever drive ensures he meets and surpasses goals.

Married to a Brazilian, Delf is a proud husband and a hands-on dad to his nine-year-old daughter. He enjoys balancing his career with family life, fostering creativity, having fun, and exploring the world together.

Melissa Dye

Melissa is honored to serve on the Simons Searchlight Community Advisory Committee as both a parent and an advocate. Her son has a de novo GIGYF1 gene mutation, and he was diagnosed with Asperger’s at age five. That diagnosis didn’t define him, but it helped them fight for the support he deserved. She spent years advocating to keep him in mainstream classes and pushing through school systems that often struggled to understand him. With the right support, he thrived — graduating summa cum laude with technical honors and ranking in the top five percent of his class.

Before this journey, Melissa worked in an adolescent psychology treatment facility, which gave her a strong foundation in understanding behavior, neurodiversity, and family systems. Combined with her lived experience, it has allowed her to help many families navigate school challenges, advocate for their children’s educational needs, and push back when systems fall short.

As part of the Community Advisory Committee, her goal is to amplify family perspectives, strengthen communication between researchers and caregivers, and support a future where families feel seen, informed, and empowered as they navigate rare genetic conditions.

Amy Fields

Amy Fields adopted two children with rare conditions out of foster care. Her oldest has the KME2E mutation. When he was diagnosed, there was little information available. Amy joined up with other parents in the KMT2E community and formed a group to provide education, connections, and hope.

Amy is a teacher and advocate. She served on the FAC at Children’s Hospital in MN where she focused on patient centered care, bereavement, and helped rewrite educational materials to make them more family friendly. Currently Amy is working for The Lucas Project, a non-profit organization that supports parent caregivers. In her spare time Amy enjoys spending time with her family, reading about Tudor history, and enjoying long Minnesota winters.

Ross Kenyon 

Ross Kenyon is the adoptive parent of a son with a rare genetic disorder. With a background in climate technologies and fostering early-stage ventures, Ross has developed a unique skill set in translating complex ideas and supporting impactful initiatives. He has worked across diverse sectors, including carbon removal, regenerative agriculture, and financial innovation, always with an eye toward creating meaningful change.

Joining the Simons Searchlight Community Advisory Committee, Ross is passionate about advancing research and building community support for individuals with genetic neurodevelopmental disorders.

Keith McArthur

Keith McArthur is the co-founder and Executive Director of the CureGRIN Foundation and the father of Bryson, a teenager living with GRIN1 Disorder. A published author and seasoned communicator, Keith is the creator and host of Unlocking Bryson’s Brain, a CBC-produced podcast chronicling his family’s journey from a mysterious diagnosis to the frontiers of genetic research. His professional background includes a career as a newspaper reporter and a tenure as Vice President of Social Media at the telecommunications leader Rogers Communications.

At CureGRIN, Keith translates his expertise in senior leadership and advocacy into a rigorous search for treatments and cures for GRI Disorders. He has been the driving force behind the foundation’s “Cure Roadmap,” a strategic framework designed to accelerate the transition from foundational science to clinical trials. Under his leadership, CureGRIN has successfully deployed nearly $1 million in research funding, positioning the foundation as a global catalyst for life-changing medical breakthroughs.

Jessica McHugh

Jessica McHugh, MPH, is an epidemiologist at a local public health agency in Missouri, where she focuses on community health data, substance use, and overdose prevention. She completed both her undergraduate and Master of Public Health degrees at Saint Louis University. Jessica has worked in public health for over 10 years and enjoys a good spreadsheet just as much as a community coalition meeting.

Jessica lives with her husband and two children in St. Louis, Missouri, where they are navigating a diagnosis of CSNK2B neurodevelopmental disorder for their youngest child. Genetic testing following the onset of seizures in July 2024 identified the gene mutation underlying the diagnosis and, like many parents of children with rare diseases, prompted a deep dive into the published literature on CSNK2B and related conditions.

Alberta McWilliams

Alberta lives on the North Coast of Northern Ireland and works within the Northern Ireland Civil Service as a Staff Officer in the Department for Infrastructure (2001 to present). Her various roles have allowed her to gain valuable skills in presentation, communication, working collaboratively, analysis and critical thinking.

Alberta is the proud mother of b/g twins, Ada & Thom, who were born in April 2016 prematurely. Ada had a very low birth weight (3.5lbs) and a difficult journey followed through the next few years. Ada received a genetic diagnosis of CUL-3 related neurodevelopmental disorder in February 2023 which was both a shock but also a comfort in that the difficulties experienced could now be put into context.

Alberta is looking forward to participating fully in CAC to help find solutions and to strive for progress. She hopes to help other families who find themselves in a similar position.

Kaitlin Miller

Kaitlin Miller, MSN, MBA, RN is Director of Clinical Quality at OneOncology where she overseas a Qualified Clinical Data Registry as well as performance in governmental and commercial value-based care programs. She is a dedicated healthcare professional with over 13 years of professional experience with a deep commitment to driving innovation in healthcare through improvement in quality of patient care and increased access. With a strong background in clinical operations and strategic planning, Kaitlin has spent years working to enhance outcomes for patients with chronic conditions and a deep passion for providing care in the community, keeping patients out of the hospital and enabling more days spent at home.

Kaitlin‘s eldest child was diagnosed in 2024 at the age of 10 with NAA15 syndrome through the Simons foundation Spark study for autism after enrolling in 2019 when standard care had little to offer. This personal experience combined with a deep understanding of the healthcare systems and payer programs has inspired a new passion for advocacy in research and healthcare solutions for those affected by rare disease. She regularly works with local providers on the benefits and process of becoming enrolled with children’s long term support services to increase access for therapeutic and recreational activities within the community for families and children effected by rare disease and disability. She is excited to be joining the Community Advisory Council as she begins her journey in understanding the rare disease space and finding where she can help make a difference.

Kaitlin holds dual Master’s degrees in Nursing Administration and Business Administration from Kent State University, along with a Bachelor of Science in Nursing.

Erin Morgan

Erin Morgan is a dedicated advocate for individuals impacted by rare diseases, driven by her personal experience as a mother of a daughter diagnosed with IRF2BPL-Related Disorder in 2024. Her journey began with a profound desire to make a difference, leading her and her husband to establish a nonprofit organization called Tough Genes, focused on raising awareness and funding research to improve the lives of those affected by IRF2BPL mutations.

As a member of the Simons Searchlight Community Advisory Committee, Erin brings a current perspective of the struggles and life altering effects of a rare diagnosis. Her personal experience, combined with her dedication, drives her ongoing efforts to shine a spotlight on these challenges faced by rare disease patients and their families. She is excited to work alongside other rare disease leaders to continue to improve Simons Searchlight and ensure that the information is both accessible and relevant to patient communities and researchers.

Erin has a professional background in Human Resources. Her passion for helping others, effective communication and solving problems in the workplace brings a valuable skill set to the rare disease space. She is committed to advancing scientific knowledge and medical understanding of ultra rare genetic disorders while supporting and uplifting patients and families. Every family deserves answers, every patient deserves treatment.