PMSF Leadership
Board of Directors:
Denise Croden - President, Director
Denise is employed by George P. Johnson, the world’s leading experiential marketing agency, where she serves as Vice President, Integrated Production for GPJ’s East clients.
Prior to GPJ, Denise held event production, marketing, and sales roles at Edible Arrangements, Jack Morton, and several pharmaceutical companies in Canada. She is a Certified Meeting Professional (CMP) and a Certified Covid Compliance Officer (CCO) and holds a bachelor’s degree from McMaster University in Canada, and a Marketing Certificate from Ryerson Polytechnic University, also in Canada.
Denise is the aunt of Johnathan Winrow, who has PMS. Before relocating to South Carolina, she was regularly involved in Johnathan’s life and has chosen board service as a way to continue to support her beloved nephew and his family.
Ben Holocher - Vice President, Treasurer, Director
Ben is a partner at Deloitte, a global accounting and consulting firm that serves the world’s most complex public and private businesses and governmental agencies. He has been advising clients on complex accounting and tax matters, cross border transactions and mergers and acquisitions for over 20 years. Ben also brings experience with risk management and organizational change management through complex technology implementations. Ben is a certified public accountant (CPA).
Ben is married to Jaime and lives in Northern Kentucky. Together, they have four beautiful kids – Ava, Jack, Jonathan and Livy. Livy was diagnosed with Phelan-McDermid Syndrome in 2020.
Chris Winrow - Director
As Vice President of Neuroscience at Recursion Pharmaceuticals, Christopher Winrow, PhD is a drug discovery veteran with over two decades of success across pharma, biotech and techbio. At Merck & Co., he led the discovery team for Belsomra®, a first-in-class CNS therapeutic, from screening to regulatory approval in less than 10 years, resulting in regulatory approvals in the US, Japan, Canada and Australia. Chris has advanced programs through lead optimization and clinical development, and has focused on critical therapeutic areas like Alzheimer’s and Parkinson’s disease, sleep disorders, schizophrenia and mitochondrial disease.
He is deeply committed to the Phelan-McDermid Syndrome Foundation (PMSF), having served for nearly 20 years in various volunteer roles, including the Scientific Advisory Committee and the Nominating Committee. He is the proud father of Johnathan, who has Phelan-McDermid Syndrome. Chris’ personal dedication to the Foundation is shared by his family, with his spouse Dana, daughter Torrey, and sister-in-law Denise all actively involved.
Professionally, Winrow excels in strategic and financial management, overseeing budgets exceeding $20M annually, conducting due diligence and securing venture and private funding. At Recursion, he integrates AI/ML approaches and massive-scale data to drive drug discovery for neurodegenerative diseases. Throughout his career, he has successfully partnered with multiple high-profile organizations, including the Rett Syndrome, Michael J. Fox, Bill and Melinda Gates, and United Mitochondrial Disease Foundations. Chris received his PhD in Cell Biology from the University of Alberta and completed a Post-Doctoral Fellowship in genetics and transcriptomics at the Salk Institute for Biological Studies. The Winrows live in Draper, Utah with their two labradors, Maple and Hattrick.
Lisa Brown - Secretary, Past Vice President, Director
Lisa is employed by IBM Consulting where she is a Senior Managing Consultant for Data Transformation & Technology across several industries and the Federal Government. Prior to IBM, Lisa spent 13 years at Fannie Mae serving as a Director in their Enterprise Data organization. Her primary accomplishments include establishing and executing on a business driven, enterprise level Data Governance program, and delivering enterprise data solutions that maximize the value of Customer Experience, Research & Analytics, and Regulatory Reporting applications. Prior to Fannie Mae, Lisa spent 15 years providing strategic information consulting services that were rooted in her college major of manufacturing operations, and anchored in effective data and process modeling. Her clients included the Bureau of Engraving & Printing, Central Intelligence Agency, National Association of Securities Dealers (NASD), Internal Revenue Service, and Department of Housing & Urban Development.
Lisa is married with two grown children. She is a close friend of PMS parents Megan & Michael O’Boyle, and had the privilege of watching their daughter Shannon grow up and live her best life. She also had the pleasure of working with PMS parents Diane Linnehan, Troy Scillian, and Jenn Carter during the 2021 PMSF website redesign, and learning about their incredible children – Courtney, Mason, and Sloane. Lisa finds serving on the PMSF Board of Directors incredibly rewarding because it provides her the opportunity to be actively involved in a cause that is meaningful to her and has a broad and significant impact on the PMS community relative to the size of the foundation.
Chardell Buchanan MA, RDN, Director
Chardell Buchanan, MA, RDN, is a Registered Dietitian Nutritionist and parent advocate whose work focuses on helping families affected by Phelan-McDermid Syndrome navigate nutrition and feeding challenges with practical, evidence-based strategies. She authored the Nutrition Guidelines for Phelan-McDermid Syndrome, developed to provide families and clinicians with clear, actionable guidance for supporting nutrition across the lifespan.
Chardell brings both professional expertise and lived experience to her work. Chardell is a dedicated mother of three children, including her son Benjamin, who has Phelan-McDermid Syndrome. As a parent of a child with Phelan-McDermid syndrome, she understands firsthand the complexities families face around feeding, gastrointestinal issues, and meeting nutritional needs. Her approach centers on making nutrition realistic and sustainable, with an emphasis on overall diet quality, nutrient density, and strategies that can actually work in everyday life.
As a member of the Board of Directors, Chardell is passionate about advancing the foundation’s scientific and clinical resources and helping translate research and guidelines into meaningful support for individuals with Phelan-McDermid syndrome and their families.
Lori Levi, MD - Director
Lori is a physician with a career spanning clinical practice, academic medicine, and healthcare leadership. After completing medical school at the University of Southern California and a residency in Obstetrics and Gynecology at David Grant USAF Medical Center, she served as an OB/GYN physician, achieving the rank of Major during her 10 years in the United States Air Force. After her military service, Lori practiced as an OB/GYN in private settings and served as an Assistant Clinical Professor at the University of Southern California Keck School of Medicine, teaching clinical medicine and mentoring family medicine residents. She then moved into healthcare management, focusing on evidence-based medicine, clinical guideline development, and team leadership.
Lori lives in Pasadena, California with her husband Alex and has two grown children. Her daughter Rachel was diagnosed with PMS as a young adult, and the family joined the Phelan-McDermid Syndrome Foundation. The immediate outpouring of education and support from PMSF made those first days so much easier. Lori is grateful to channel her passion and expertise into supporting families, raising awareness, and making life better for everyone affected by Phelan-McDermid Syndrome.
Blaire Malkin - Director
Blaire is an attorney at Mountain State Justice, a nonprofit legal services organization, where she focuses her practice on helping students with disabilities obtain the educational services they need to be successful. Prior to working at Mountain State Justice, she spent eight years as an Assistant United States Attorney in the criminal division and prosecuted a wide range of crimes.
She grew up in Winnipeg, Canada and Wichita, Kansas. She attended university at Tufts University and received her law degree from Harvard Law School.
Blaire currently lives in Charleston, West Virginia with her husband Rob Bastress and their two children. Arlo is an 8th grade student at John Adams Middle School, and Della is in 5th grade at Ruffner Elementary.
Her daughter Della was diagnosed with Phelan McDermid Syndrome when she was 2.5 years old. After receiving this diagnosis, she quickly became a supporter of the Phelan McDermid Syndrome Foundation. She is an active member of the Charleston community and has a particular interest in working with community members with disabilities both through her work at Mountain State Justice as well as president of the board of Exceptional Possibilities of West Virginia. Exceptional Possibilities plans monthly events for people with disabilities in the community and hosts a week long summer camp for children who use alternative and augmentative communication (AAC) devices to communicate.
Blaire also serves on the Board of Directors of the Kanawha County Library and on the Friends of the Library Steering Committee..
In her free time she enjoys running, doing yoga, reading, watching her kids play sports, and being an active member of multiple book clubs.
Mat Pletcher - Director
Mathew Pletcher, PhD, is the Chief Scientific Officer at Weaver Biosciences, where he leads scientific strategy for a pioneering therapeutic platform focused on targeted gene regulation. Over a career spanning nearly two decades, Mat has held senior scientific and research leadership roles across industry and academia, including serving as Chief Scientific Officer at Kisbee Therapeutics, Senior Vice President and Division Head for Gene Therapy Research at Astellas Gene Therapies, and Head of Rare Disease for Roche. In these roles, he led multidisciplinary teams and advanced portfolios in rare diseases, gene therapy, small molecules, and biologics. Prior to his industry leadership, Mat established and directed genetics research programs at academic and non-profit institutions, contributing to foundational genomic science early in his career. He holds a PhD in Human Genetics from the Johns Hopkins School of Medicine and completed postdoctoral work at the Genomics Institute of the Novartis Research Foundation.
Mat also co-founded the RDH12 Fund for Sight, a nonprofit focused on advancing gene therapy for a rare inherited retinal disorder, and serves on the board of Odylia Therapeutics. He is a member of the Scientific Advisory Board for 64x Bio and holds an adjunct faculty appointment at the University of North Carolina. His deep expertise in rare disease biology, translational research, and biotech innovation enriches PMSF’s mission to accelerate research and improve outcomes for families impacted by Phelan-McDermid syndrome.
Emeriti Advisory Committee:
Susan Lomas – Emeriti Advisory Committee, Past President, Founder
Sue is the wife of Rich Lomas and the mother of Sam. She graduated from Boston College, with a BA in English/Education and taught Special Education in Vermont. After her teaching career, Sue worked 7 years for a software company, the last 3 years as Project Manager of various software installations in Europe; Vienna, Milan, Zurich, London. Since the birth of her child, she retired from the public sector and began her new career as a volunteer. These activies include: Co-chair of the School Advisory/Management Team of Oak Park School, Sarasota; member of Sarasota County School Board Legislative Committee; member of Sarasota County’s Exceptional Student Advisory Board; Partners in Policy graduate, State of Florida; President Naples Horseback Riding Therapy group. The Lomas’ are also one of the original 25 families identified as having children affected by Phelan McDermid Syndrome Foundation (PMSF). Sue was elected President of PMSF in 2002 and helped establish its non-profit status in 2003.
Nick Assendelft – Emeriti Advisory Committee, Past Vice President, Founder
Nick Assendelft is Past Vice President of the Phelan-McDermid Syndrome Foundation, serving from 2002-2020. He was instrumental in the evolution of the PMS Foundation by working with volunteers, fund raising, conference planning, communications, developing a new logo, advocacy and global outreach. Nick lead the Communications Committee and was the editor of the PMSF UPDATE monthly newsletter. He and his wife, Ruth, have a son, Jacob, who was one of the original 25 cases of Phelan-McDermid Syndrome to be identified. Jacob has an older sister, Rachel, who also volunteers with the Foundation. The family has attended every Support Group conference since the inaugural gathering in Greenville, South Carolina, in 1998. Nick is the media relations coordinator and public information officer for the Michigan Public Service Commission and the Michigan Agency for Energy. Prior to that, he worked at newspapers in Detroit, New Orleans, Pittsburgh, Utica, N.Y., and other cities. He has a degree in journalism and political science from Central Michigan University. Nick also is a member of the Board of the Old Newsboys’ Goodfellows Fund of Detroit, which provides Christmas gifts to underprivileged children in the Detroit area.
Dr. Katy Phelan – Emeriti Advisory Committee, Past Director, Founder
Dr. Katy Phelan is a native of Jacksonville, Florida. She is currently the Director of Cytogenetics at Florida Cancer Specialists in Fort Myers, FL. She earned her Doctorate in Human Genetics from the Medical College of Virginia in Richmond and completed a post-doctoral fellowship in cytogenetics at the Greenwood Genetic Center in South Carolina. She has served as the cytogenetics lab director in Greenwood, at the Genetic Diagnostic Laboratory at T.C. Thompson Children’s Hospital in Chattanooga, TN, at the Molecular Pathology Laboratory Network in Maryville, TN, and as the director of the cytogenetic laboratory and Associate Professor of Pediatrics at Tulane University School of Medicine in New Orleans, LA, prior to her current position. Dr. Phelan is certified by the American Board of Medical Genetics as a Clinical Cytogeneticist and as a Ph.D. Medical Geneticist. She is a Founding Fellow of the American College of Medical Genetics
In 1988 Dr. Phelan first studied a child with deletion 22q13 while at the Greenwood Genetic Center. This rare case sparked a lasting interest in this deletion syndrome. In 1998, she established the 22q13 Deletion Syndrome Support Group, an active network of parents and professionals whose purpose is to educate and increase awareness of this distinct and fascinating syndrome.
