BOARD OF DIRECTORS
The Malan Syndrome Foundation Board Members are unpaid volunteers. The goal of the Board is to oversee the organization's activities and support the mission.
Kimberly Ventarola, President and Co-founder
Kim, more often referred to as "Dominick's mom", has a Master of Science degree in Special Education and has been a dedicated special education teacher since 2007. She currently works as a special educator in the home setting for medically complex students in New Jersey. Upon receiving Dominick's diagnosis of Malan syndrome in 2017, she couldn't help but be fearful about the future of raising a child with such an ultra-rare disease. Kim quickly recognized that resources and research was so limited and she knew she needed to help bring awareness and hope to other families affected by Malan syndrome. In 2018, she connected with three empowering and devoted Malan moms and they quickly joined forces to co-found the Malan Syndrome Foundation.
Kim is determined to never let another family walk this path alone. Her passion lies in advocacy, education and support. Kim dedicates a lot of her time ensuring equity and accessibility for individuals of all abilities. She is honored to stand beside her fellow board members to help pave the way for others on this rare journey.
Dr. Christal Delagrammatikas, Director of Research, Co-founder
Christal has a Bachelor of Science in Biochemistry from Virginia Tech and a PhD in Pharmacology from the University of Michigan. Her doctoral studies investigated the role of different neurotransmitters in the regulation of rapid eye movement (REM) sleep; and her postdoctoral research at Weill Cornell Medical College of Cornell University explored brain pathways contributing to sleep apnea-induced hypertension. She continued on at Weill Cornell Medical College as an Assistant Professor of Neuroscience. Christal is now a full-time caregiver and lives with her husband and two sons in North Carolina. Her oldest son, Yanni, was diagnosed with Malan syndrome in February of 2018.
Christal has used her academic training to learn as much as she can about the syndrome and is passionate about driving research forward so that we can gain a better understanding of this complex rare disorder. As a member of the Board, she is committed to the mission of the foundation and is determined to help change the course of the lives of those affected by NFIX genetic changes.
Brandilyn Johnson, Vice President of Community Outreach, Co-founder
Brandilyn has a Bachelor of Science degree in Elementary Education. She has dedicated her time for the past 9 years in a first grade classroom supporting children in becoming the best version of themselves. She currently resides in Delaware with her husband and two sons. Her oldest son, Dawson, was diagnosed with Malan syndrome in November 2017 at 13 months of age. Dawson’s diagnosis included a whirlwind of emotions surrounding it. With love, support and connections made along her Malan journey, Brandilyn is able to be Dawson’s advocate and fight daily to have his needs met. Brandilyn hopes to be a support for families battling with similar emotions, as well as a resource and an educator for those in need. She is thrilled to be working alongside her fellow board members to bring awareness to Malan syndrome and has high expectations to be an important piece in helping so many others on this journey.
Susan Amass, Treasurer
Susan is a devoted grandmother, whose youngest grandchild, Dominick, was diagnosed with Malan syndrome in 2017. Susan joins the Board with 30 years of accounting experience. She hopes her service will help create brighter futures for individuals with Malan syndrome.
Katie Jordan, Secretary
Katie holds a Masters degree in Psychology from Saint Joseph’s University in Philadelphia, PA, and has worked with at risk youth since 2009. She is currently a State Program Director for a non-profit agency in New Hampshire that provides specialized clinical and case management services to youth that are in foster care. Katie resides in Massachusetts and is grateful for her husband Jeremy, and their two children Andrew and Olive.
Her son Andrew was diagnosed with Malan Syndrome in the Fall of 2018, just a few months after his first birthday. Following Andrew’s diagnosis, Katie discovered the Malan Syndrome family support group on Facebook. Not only has she had the opportunity to watch this group grow into the foundation it is today, but she has not found a more helpful source of support for parents and caregivers.
Katie is honored to be part of the Executive Board for the Malan Syndrome Foundation, and hopes to be successful in driving its mission forward through increasing awareness, fundraising, and offering support to caregivers that are looking to provide the best possible life to their sunflowers.
John Peet, Board Member
John has Bachelor of Science in Viticulture which included study of genetics and works in Environmental Project Management in Australia. John’s science background has been invaluable in learning about what Malan syndrome means for his son, Oliver. He and his wife were aware almost from Oliver's birth that something was different for their son. After many years of having no diagnosis, Oliver was the first child diagnosed with Malan syndrome in Australia in 2016. It has been an interesting journey to date for John and his family. They are leading the way with service providers to gather a greater understanding and awareness of Malan syndrome. John looks forward to the opportunity to share his experiences and to advocate on behalf of the children and families in the Asia Pacific region.
Dr. Verena Caetano Da Silveira, Board Member
Verena holds a MsC in Production Engineering from UFSM (Brazil) and a PhD in Design from the Polytechnic of Turin (Italy). Verena currently studies how organizations evolve, doing applied research on the architecture of the organizational systems between America and Europe. She has lived in different continents, countries and cities and has been working for over 20 years for major universities and research institutes. She also has experience in the construction, infrastructure, logistics and aerospace sectors.
Verena is passionate about creating conditions for meaningful personal interactions and the implementation of wise actions to generate positive changes. As a member of the Board, Verena is engaged in building bridges between our organization and its context to: enable wide inclusivity (researchers, families, institutions), let knowledge flow, bring help, shorten distances to reach every sunflower and help him/her grow healthy, cheerful and in good company. Together we are happier!
PARENT ADVISORY BOARD
Yuri Barragan
USA
Jaclyn Burgwald
USA
Sky Collins
USA
Anne-Laurence Huillery
France
Dan Israel
USA
Nicole Ivelic
USA
Laura Ceja-Vargas
Mexico
Former Board Members:
Bethanne Durell, Co-founder and Secretary (2018-2020)
Bethanne holds a Masters degree in Social Work from Boston College. She has dedicated the past 15 years working with at risk youth dealing specifically with the emotional and behavioral issues of family integration, education and socialization.
At 4 weeks old, Bethanne became concerned about her daughter Parker’s development. Due to these concerns, Parker began seeing multiple specialists at Boston Children’s Hospital. With very few answers, Bethanne was then referred to the Feingold Center to inquire about a possible genetic condition. The Feingold Center helped Bethanne, her husband and Parker to get complex genetic testing which provided a better understanding of Parker’s presentation of symptoms and a diagnosis of Malan syndrome.
Bosko Kacarevic, Board Member (2019-2020)
Natalie Meurer, Secretary (2021-2022)
