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, 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.
Lisa Brown - Secretary, Past Vice President, Director
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.
Michael Cento, Treasurer, Director
An active member of the finance committee, Mike is a former middle school math teacher and is now a CPA at Kymera International.
Mike’s wife Jen is a co-REP for North Carolina families and they are strong supporters of the Foundation. Jen and Mike are parents to two daughters. Emily was diagnosed with Phelan-McDermid syndrome in October 2022.
Chardell Buchanan MA, RDN, Director
Chardell Buchanan, MA, RDN holds a Bachelor of Science degree in Dietetics with a minor in International Relations from Brigham Young University and a Master of Arts degree in Community Health Education from The City University of New York-Brooklyn College. She is a Registered Dietitian Nutritionist with extensive professional experience across diverse areas of nutrition and health education.
Throughout her career, Chardell has demonstrated a passion for improving lives through nutrition and community engagement. She has worked as the lead clinical dietitian at a long-term care facility, provided nutrition counseling for families affected by HIV/AIDS, managed a New York City-based food pantry, and served as a health and wellness coach for corporate employees. Additionally, she has shared her expertise as an adjunct professor, teaching human anatomy and physiology courses at Provo College.
In the rare disease community, Chardell has been a tireless advocate, raising awareness and supporting families affected by Phelan-McDermid Syndrome (PMS). She organized and hosted the first-ever Phelan Lucky yoga challenge, which ran for four consecutive years, raising funds and awareness for the foundation. She has also presented at national and international conferences, including the FOXP1 Foundation’s conference and the PMSF annual conferences in 2022 and 2024. Her advocacy efforts have extended to media, where she has been featured in podcasts, TV interviews, local news segments, and articles in state newspapers and the Mount Sinai Magazine.
Among her many accomplishments, Chardell delivered the keynote address at the Make-A-Wish Gala for the Hudson Valley, and contributed to airline magazines with published articles on healthy diets. She has also worked with the Seaver Autism Center on a family-focused video and participated in a Make-A-Wish video about her family’s journey.
In addition to her professional and advocacy work, Chardell is a dedicated mother of three children, including her son Benjamin, who has Phelan-McDermid Syndrome. She is active in her local congregation, where she has held multiple leadership roles, and enjoys hobbies such as baking, quilting, puzzles, and reading.
With her extensive background, leadership skills, and personal connection to the Phelan-McDermid Syndrome community, Chardell brings a unique blend of expertise and passion to her role on the Board of Directors.
Heidi Grabenstatter - Director
Heidi Grabenstatter, Ph.D., is the Scientific Director of the International Foundation for CDKL5 Research (IFCR) and a Senior Research Associate of Integrative Physiology at the University of Colorado Boulder. Her research background is in molecular and physiological mechanisms of epileptogenesis and rationale therapy development. Her postdoctoral appointments were in adult and pediatric neurology departments at the University of Wisconsin School of Medicine and Children’s Hospital Colorado, respectively. She is the PI of a NIH-funded laboratory currently focusing on in vivo animal studies of comorbidities associated with epilepsy including cardiac dysfunction and circadian disruption. As an epilepsy patient herself, Heidi promotes patient-driven research and caregiver engagement in the development of new tools that impact their children’s treatment. Her commitment to rare disease patient advocacy is strengthened by her personal understanding of the extreme challenges that people with epilepsy face and experience as a caregiver to her mother and sister, both of whom passed from rare cancer diagnoses. The combination of her passion, her academic experience, and her patient perspective make Dr. Grabenstatter uniquely positioned to act as a conduit between patients and caregivers with unmet needs and the clinical and research communities in the rare neurodevelopmental disorder space to foster innovative research solutions. Heidi works closely with IFCR’s Board of Directors, MSAB, Centers of Excellence, and International CDKL5 Clinical Research Network (ICCRN) to ensure all projects are scientifically vetted and meet patients’ needs.
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.
Eden Rivera - Director
Eden is a PhD student in the International Education Policy program at the University of Maryland, College Park. Her research focus is on equitable, inclusive and accessible education opportunities for youth in the neurodivergent population and with various abilities. She holds a MA in International Education Policy and a BA in International Studies. She hails from Southern California where her passion for empowering youth and advocating for children from marginalized communities began. Prior to moving to Maryland, she had the opportunity of working as the primary caregiver to an amazing young adult with PMS, which is how she was introduced to the PMS community. With over twenty years of experience working with children and adolescents ranging from infants to college age young adults in various education settings, she has had ample opportunities to learn from youth and families from diverse backgrounds and always bring that knowledge with her in current and future endeavors.
Catherine (Cat) Valcourt-Pearce - Director
Catherine (Cat) C. Valcourt-Pearce has worked at Gallaudet University’s Laurent Clerc National Deaf Education Center, in Washington, D.C., for more than 25 years. She is both the coordinator of publications and managing editor of the Clerc Center’s Odyssey: New Directions in Deaf Education magazine. She also served as a freelance content advisor for four children’s books published by Enslow Publishers related to sign language and deafness. Cat received both her bachelor’s degree in English (writing) and communication arts and her master’s degree in administration from Gallaudet; she received her publication specialist certificate from George Washington University. While an undergraduate student in 1991, she joined Gallaudet’s Personal Discovery Program—a team building program with the philosophy of “challenge by choice”—as a staff member and has since taught workshops with the program both nationally and internationally to participants of all ages from diverse backgrounds and with a range of needs and abilities.
Cat and her husband, Larry, are the proud parents of four sons—Cole (an “OHKODA” or “only hearing kid of Deaf adults”), Cree (who has Phelan-McDermid Syndrome/ring chromosome 22 and neurofibromatosis 2), and deaf fraternal twins Zev and Kai. They reside in Maryland.
Operations:
Ronni Blumenthal – Chief Executive Officer
Ronni started her career at an adult day treatment center in Sparkill, NY. She started as the executive assistant but quickly found her way into the classroom where she ran a visual arts program and became the coordinator for a group of young adults with autism. Ronni continued to work with agencies in the New York area, and spent eleven years at Greystone Programs, Inc., most of which were spent as the CEO. Taking over after the founder’s retirement, Ronni grew the program into a five county area along the Hudson River, offering services for all ages with a focus on autism and people with severe reputations/challenging behavior. Ronni has lectured across the country and abroad with a focus on practical approaches to working with children and adults with autism, as well as the professionalization of direct support staff who work with them. After a hiatus of ten years where Ronni was the vice president of a large organic produce distribution center, she is happy to have returned to her roots and is delighted to be working with the board, staff, and volunteers of PMSF. Ronni lives in Sarasota with her husband Pearse, her two children, Dov and Mariela, and four furry family members.
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.
