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 commonly known as "Dominick's mom", has a Master of Science degree in Special Education and has dedicated the past 13 years teaching the special needs population. She currently works as an Early Intervention Practitioner in New Jersey. Upon receiving Dominick's diagnosis of Malan syndrome, Kim couldn't help but be fearful about the future as the resources and research are so limited. She knew she needed to help bring awareness to this rare disorder. Kim has always had a passion for helping, educating and supporting others. She is honored to stand beside her fellow board members to help pave the way for others on this journey.
Christal Delagrammatikas, Vice President and 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 at age 8 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.
Bethanne Durell, Secretary and Co-founder
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.
With the help of social media and the Feingold Center, Bethanne was able to connect with other families with this condition. She soon realized more resources were needed for further research and awareness of Malan syndrome. She is honored for this opportunity to be apart of this foundation and begin to support others dealing with this complex condition.
Brandilyn Johnson, Treasurer and Co-founder
Brandilyn has a Bachelors 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 son Dawson. Her son was diagnosed with Malan syndrome in November 2017 at 13 months of age. Being a first time parent, Dawson’s diagnosis included a whirlwind of emotions surrounding it. With love, support and connections made in 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 the journey of Malan syndrome.
Bosko Kacarevic, Community Relations Advisor
Bosko holds an MBA from Syracuse University in Organizational Management as well as a Master of Science in Education from Niagara University. He earned his Bachelors of Science in Journalism from St. John’s University in Queens, New York. He currently resides in New Jersey with his wife and daughters, Sofia and Mila.
Bosko successfully transitioned from serving as a Teacher in the NYC public school system to becoming a Knowledge Management strategist and practitioner for large corporations across a number of industries. Here in the private sector, he has successfully led projects developing and implementing Communities of Practice as a way to connect people to people and people to content around topics that are both meaningful to them and their organizations.
He now has an opportunity to help grow a community that is deeply personal to him. Bosko’s daughter Sofia was diagnosed with Malan Syndrome in January 2019 at the age of 13. The diagnosis answered so many long sought after questions, but so many new questions arose that needed answering. Connecting with the Malan Syndrome community on Facebook helped answer some of those questions, but more importantly made his family feel connected to a much larger community. It showed them that they weren’t alone.