Community Advisory Committee

Christie Abercrombie

Christie Abercrombie is a dedicated individual with a passion for making a difference in the lives of others. With a degree in psychology and 10 years of pharmaceutical sales, she brings a strong scientific background to her philanthropic pursuits. Christie has spent many years actively engaged in charity service, demonstrating a deep commitment to helping her state change archaic laws.

In addition to her academic achievements, Christie has gained valuable experience working with children with many different abilities. As the current children’s director at her church, Christie is committed to providing compassionate care and support to all children, including those facing unique challenges.

With a heart full of compassion and a mind grounded in scientific knowledge, Christie continues to make a meaningful impact in both the scientific community and the realm of charitable service, embodying the spirit of service in her life’s work.

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.

April Canter

April Canter is a federal strategy director for the American Association for Retired Persons (AARP), April engages in advocating for the interests of the 50+ community while collaborating closely with Congressional Republicans. Her role involves strategizing and promoting initiatives aimed at benefitting this demographic.

Before assuming her current position, she served as the coalition’s director & senior legislative assistant for Congressman Joe Sempolinski (NY-23). In this role, she managed various aspects of the Congressman’s legislative endeavors, including Congressional appropriations requests, co-sponsorship movement, and stakeholder engagement.

Prior to her work with Congressman Sempolinski, she spent four years at the Harley-Davidson Motor Company. Her responsibilities included overseeing the US government affairs strategy and managing the Harley Political Action Committee (HarleyPAC).

April’s professional background also encompasses advocating for the scope of practice of advanced practice registered nurses for the American Nurses Association and safeguarding artists’ intellectual property rights for the Recording Academy – The Grammys.

With a deep-rooted passion for public service, April has held roles at all levels of government – municipal, county, state, and federal – across the legislative, executive, and judiciary branches.

Originally from Arizona, she pursued a BS in political science from Northern Arizona University and obtained a master’s degree in public administration from the University of Colorado at Denver.

Jacquelyn Cattage

Jacquelyn Cattage was born and raised in Jackson, MS.  She obtained an undergraduate degree in psychology from the University of Mississippi (Ole Miss) and moved to Saint Louis, MO where she trained and received a doctorate in clinical psychology at Saint Louis University. She completed her postdoctoral training at Family Care Health Centers and has remained on staff at the federally qualified health center to this day with a clinical focus in pediatric behavioral health issues and assessment of Autism in children and adolescents.

She is also involved in medical education, holding the position of part-time adjunct behavioral science faculty in the SSM Saint Louis University Family Medicine Residency in St. Louis. Jacquelyn is a wife and mother of three young children, one of whom was diagnosed with a rare genetic condition (SETD5 deletion) in 2020. Jacquelyn is passionate (both personally and professionally) about helping families gain education and understanding of neurodevelopmental conditions and reducing barriers to accessing assessment, treatment, and support services, especially within the BIPOC (black, indigenous, and people of color) community. She is excited to have been chosen to participate on the Simons Searchlight Community Advisory Committee to help and support creative efforts to expand outreach to those communities that are currently underrepresented in the medical research of rare genetic conditions.

Sarah Davis

Sarah Davis, PhD is a sterility assurance drug reviewer for the Food and Drug Administration (FDA). 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. She holds a PhD in microbiology from the University of Tennessee and a bachelor’s in microbiology from Clemson University. Research at each institution has resulted in multiple 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. Currently there have been only ~20 documented cases globally. The genetic sequencing results have given her family a better understanding of both Sarah’s and Holly’s childhoods, and potential insight into Holly’s future development. 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.

Alida James-Fenner

Alida James-Fenner is a former educator, teacher mentor/coach, school/museum administrator, educational technology consultant, constant maker of to-do lists and a vocal advocate for her son, Evan. He was diagnosed with 2q23.1 microdeletion syndrome in 2012 at age four. Now known as MAND (MBD5-Associated Neurodevelopmental Disorder), Evan is one of about 600 known cases worldwide. Although there is variation among those diagnosed with MAND, Evan’s diagnosis includes Autism, Intellectual Disability, ADHD, Epilepsy, Scoliosis, Bilateral degenerative progressive high myopia, and a myriad of other medical and educational concerns. He is also kind, expressive, clever, joyful, loving, and a whiz with any sort of technology.

Alida helps to moderate numerous support spaces; including the 2q/MAND Caregiver Support group and the MAND Research Roundtable on Facebook. She is active in her local community as well, most recently working with the Mid-Atlantic Equity Consortium as a Maryland Parent Representative. She prides herself on finding opportunities for Evan to participate in as many adapted activities as possible, including waterskiing, boating, camping, theater, hip-hop and ballet classes, karate, and Miracle League to name a few. 

Alida is excited to join the Community Advisory Council this year. She hopes to bring attention to MAND as a research opportunity for scientists, to highlight some of the unique challenges of being a member of a minority group while also being diagnosed with a rare disorder, and to offer continued support and knowledge to “2qties” and their families around the World. 

She lives in Maryland with her husband Jesse and their son.

Rebeca Ridings Figueroa

Rebeca is the Research Program & Charity Manager at Cure CLCN4. Her role is to help advance the goals of Cure CLCN4, working with the Board of Trustees to develop, shape and implement Cure CLCN4’s research strategy, policy and governance. Originally from the Canary Islands (Spain), Rebeca completed a PhD in Genetics at the University of Cambridge. She also holds a Master’s by Research and a BSc in Molecular Cell Biology from the University of York.

Simons Searchlight has been an integral part of Cure CLCN4’s mission of moving the research on CLCN4-related conditions forward, and Rebeca is now excited to give back by bringing her energy and expertise to the Simons Searchlight CAC and to contribute to the CAC’s mission of supporting and shaping research initiatives within the Simons Searchlight community.

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.

Piotr Kosla 

Piotr Kosla is a proud parent of 2 years old fraternal twin girls – Lena & Zuzia. Lena has extremely ultra rare, single point mutation in the PACS2 gene with only dozens of cases diagnosed worldwide.

Following Lena’s rapid diagnosis thanks to whole exome sequencing (7 weeks from 1st seizure) in February 2022, together with his wife Malgorzata, they have decided to take advantage of their entrepreneurial spirits to save their daughter and founded PACS2 Research Foundation (May 2022) to start exploration around PACS2 syndrome. Completely from scratch as a mechanism of action is unknown. Today, they work with several scientists across the whole world, actively managing 7 projects and pushing science to help all patients with PACS2 syndrome, almost all of whom have a mutation in the same place.

Very quickly, together with his wife Malgorzata, they went beyond PACS2 syndrome, supporting other families and helping them navigate in this complex world. “I am thrilled to be joining Simons Searchlight as a CAC member, a program with whose mission I am fully aligned, where I can leverage my professional background and personal journey to uplift and advocate for families impacted by rare diseases. The opportunity to contribute to this cause ignites an unparalleled sense of purpose within me, underscoring the importance of supporting others in their moments of greatest need. The rare diseases community has captured my profound interest, and I am committed to driving scientific progress and bringing the international voice of rare disease patients and their families.”

Piotr holds a master’s degree in finance & international management, but quickly turned his pathway towards commercial bringing experience from various industries and today he is focusing on rare diseases in his professional life. He is rare- disease community contributor 24/7. He lives with his family in Warsaw, Poland.

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.