The Partners
The planning of this trial is the result of a strong collaborative effort between physicians, researchers, and patient advocates.
Dr. Ricki Carroll
Dr. Carroll is a hospitalist and palliative care specialist at Nemours Children’s Health in Wilmington, Delaware. She has been a critical part of the skeletal dysplasia group for years and is currently acting as the Principal Investigator on the Natural History Study for RCDP.
Dr. Michael Bober
Dr. Bober is a pediatrician and medical geneticist. He has a long involvement with the RCDP patient community and is the Principal Investigator on both the RCDP Registry and advisor for the Natural History Study and clinical development of plasmalogen precursors.
Shawn ritchie, PhD
Shawn is the CEO and Chief Scientific Officer at Med-Life Discoveries. He has over 20 years of experience using non-targeted metabolomics to investigate underlying biochemical causes of disease. Shawn is responsible for the strategic direction of MLD's diagnostics and therapeutics programs, including RCDP.
tara smith, PhD
Tara is the Executive Vice President, Innovative Therapies at Med-Life Discoveries. She has worked for over 15 years on the pre-clinical and clinical assessment of plasmalogen precursors as potential therapeutic agents both in RCDP and diseases of aging. She oversees the day-to-day management of the therapeutics programs and maintains a close relationships with the all the involved consultants as well as Rhizokids International, the parent advocacy group.
cassie brown, MS, CCRC
Cassie is the research coordinator for the skeletal dysplasia program at Nemours Children’s Health in Wilmington, DE. She has spent years organizing and implementing numerous research studies on skeletal dysplasias, including the Natural History Registry for RCDP. Cassie is the study coordinator for the natural history study and will be involved in any future experimental therapy efficacy trial.
melinda holladay
Melinda is the president of RhizoKids International, the largest parent advocacy group for patients with RCDP. She is the mother of 3 boys including Ethan, age 17, with RCDP. Melinda has been working with the team to provide information on what it is like to manage RCDP and what could be potential end-points worth evaluating in the trial.
tracey thomas
Tracey is the co-founder of Rhizokids International, the largest parent advocacy group for patient with RCDP. She formed Rhizokids as an organization to raise funds and awareness to support those with RCDP and research towards a treatment. She is the mother of 2 boys including Jackson who was born with RCDP in 2007 and unfortunately passed away in 2013. She works tirelessly to advocate and support those walking the RCDP path and provides invaluable insight into RCDP and the RCDP community.
Mousumi Bose, PhD
Mousumi is an Assistant Professor in the Department of Nutrition and Food Studies at Montclair State University. Having lost a child to Zellweger spectrum disorder (a rare disease closely related to RCDP), Mousumi’s research interests are based in understanding quality of life and other family-reported outcomes in rare pediatric diseases. She will be leading the development of a caregiver-reported survey tool to measure quality of life in children affected by RCDP.
Candace Muss, GCG, PA-C
Candace is a co-investigator on the Natural History Study for RCDP at Nemours Children’s Health in Wilmington, DE. She will be primarily responsible for scheduling and logistics for the Natural History Study, we as involved in performing some of the on-site assessments. Candance will also be involved in any future experimental therapy efficacy trial.