Board of Trustees

Nick Seaver​
Kelly Sexton
VP / Founder
Kim Sokorai​
Board Member
Katie Barry Boychuck​
Vanessa Dias​
Board Member

Nick Seaver


Nick is the Co-Director of the CURE MED13L Initiative, which is dedicated to research and development towards medicines for MED13L carriers. He is the father of twin girls, one of whom has MED13L. His daughter was diagnosed in 2016, based on a genetic test performed in 2011. He brings to the Foundation his background in organization-building, finance and biotech. Nick is a founding member and Managing Director at Ziff Capital Partners, where he oversees direct private investments, with a focus on biotech. He is also Chief Business Officer, Chief Financial Officer and Board Director at Corner Therapeutics, a portfolio company. Previously, Nick was the CEO of Thanyapura, a diversified holding company based in Asia. His background includes private equity investing at JP Morgan Partners and mergers and acquisitions at Lazard Frères. Many years ago, Nick and his wife participated in a full-time silent retreat as part of The Shamatha Project, the first major scientific study on meditation, which he has described in his TEDx talk. He grew up in New York, has lived in Europe and Asia, and currently resides in Connecticut with his wife, two children and two dogs. Nick is a graduate of Harvard College.

Kelly Sexton

Vice chair, Founder

Kelly is the Founder and former President of the MED13L Foundation. Following the diagnosis in 2016 of her two sons, Dylan and Logan, she immediately saw the need for an official organization to advocate for families affected by MED13L. Starting in 2009, Kelly and her husband Ryan searched for a diagnosis for their sons. In 2014, after years of testing, her family enrolled into a research study at the Children’s Hospital of Philadelphia called PEDI SEQ: the CHOP Pediatric Genetic Sequencing Project. Finally, in 2016 her family received the news that both their sons had a rare diagnosis called MED13L. At the time of their diagnosis they were informed their boys were only 2 of 15 cases medically published in the world. To finally have a name to go along with a long list of symptoms and medical issues was a wonderful feeling, but at the same time Kelly and Ryan felt defeated as no answers or explanations could be given because of the rarity of MED13L. The genetics team provided one piece of advice and that was to find other families to be able to learn from each other, again emphasizing that the medical community was not going to provide much guidance. As Kelly will say their MED13L journey began immediately when given the diagnosis. With the love and support from family and friends the MED13L Foundation was established in 2017. The mission was clear that this non-profit organization needed to connect families, share information, and engage with the scientific community so that we could better understand and advocate for our MED13L loved ones. Prior to her work with the MED13L Foundation, Kelly worked in research at the University of Pennsylvania as a Clinical Research Coordinator working collaboratively on research study grant writing, development of protocols, regulatory policies, patient advocacy, and quality patient care. Witnessing firsthand the impact bench to bedside research can have on a community, especially a rare community, one of the initial goals of the MED13L Foundation was to help advance research. Kelly began facilitating research initiatives by connecting and collaborating with researchers, organizations, and other MED13L families to push forward the Foundation’s mission. Today other MED13L families have joined the cause which is truly a sign of hope and strength. Kelly is primarily focused on community outreach directly supporting and providing resources to families. Additionally, Kelly is assisting the operational functions of the non-profit. Kelly and Ryan believe the boys are miracles and even though having a disabled child, let alone two, is met with challenges…. they wouldn’t change it for the world. As parents, they are most inspired by the beautiful bond between their sons and the JOY they have given others. Joy is a common theme reflected among other MED13L parents and families. Kelly’s hope is that one day diagnosed families are given a clear outlook on living with MED13L so that families feel supported and empowered. Kelly, Ryan, Dylan, Logan and daughter Maggie reside in New Jersey.

Kim Sokorai


Kim has spent 24 years working for the United States Department of Agriculture, Agriculture Research Service, first as a research scientist and then as an administrative officer. Kim Sokorai is the aunt to Dylan and Logan, two wonderful boys diagnosed with MED13L in 2016. Since the origin of the Foundation, Kim has been a committed volunteer and staunch advocate for MED13L and MED13L families. As the MED13L Foundation pushes the advancement of curing MED13L to the next level, Kim hopes to utilize her experience in bench science, manuscript writing, collaborative agreements, project funding, budgets, developing project plans, administrative skills, and serving as a liaison between the administrative and scientific staff. Kim lives in Mullica Hill, NJ with her husband Dave and two sons, Jack and Cole, and dog Leo. Kim received her B.S. in Chemistry from St. Joseph’s University and her M.S. in Microbiology from Thomas Jefferson University.

Katie Barry Boychuck


Katie Barry Boychuck has over a decade of corporate legal experience in various industries including nonprofit governance and financial reporting. Katie lives in Chicago with her husband Mike and her three sons Mac, Jack, and Collin. Collin was 15 mos old when the Boychuck family received his MED13L diagnosis. After receiving the diagnosis, Katie found the inspiring MED13L community and decided to shift her career to finding a cure. Curing rare diseases has always been a passion for Katie. For several years, Katie supported and eventually served as the Chicago race director for Cupid’s Run, raising money for research to help end neurofibromatosis (NF). Currently she is the Director of Development Operations for the Foundation. Prior to joining the Board, Katie served as in house counsel to a real estate management and development company focusing on all aspects of commercial real estate, including acquisitions, dispositions, leasing, and financing. Katie received a J.D. from DePaul University and a B.A. in Liberal Arts and Sciences from the University of Illinois.

Vanessa Dias

Board Member

Vanessa is the Co-Director of the CURE MED13L Initiative research initiative. Vanessa has been a registered nurse for over 20 years working in various settings including critical care and clinical coordination. She lives in Westchester, NY with her husband and her three children. Her youngest child, Elle, was diagnosed at 14 months with MED13L. Since receiving her diagnosis, Vanessa has been on a mission to connect with the MED13L community in a way that fosters progress and hope for all individuals diagnosed with MED13L.

Jenny Robertson


Jenny Rubin Robertson, an accomplished legal professional with extensive experience in the healthcare sector, is joining the MED13L Foundation. Her expertise spans various senior roles, including Chief Legal & Administrative Officer at LEXEO Therapeutics and Chief Counsel to Pfizer’s Oncology and Rare Disease Business Units. At Pfizer, she led global legal teams and advised on diverse matters from commercialization to intellectual property. Earlier in her career, Jenny worked in private practice, focusing on healthcare law. She holds a BA in Political Science from Southern Illinois University and a JD from Georgetown University Law Center, where she co-founded and led The Georgetown Journal of Gender and the Law. Jenny is also a dedicated advocate for women’s professional growth, actively participating in women’s affinity groups. Her experience and passion for healthcare law will be invaluable to the MED13L Foundation.