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 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, Treasurer and 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.

Former Board Members:

Bethanne Durell, Co-founder (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)

DISCLAIMER

The information provided on this website is not intended to be a substitute for professional medical advice. No images on this site may be used without the written consent of the Malan Syndrome Foundation.

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