Troy w Greisen, CFRE

Chief Executive Officer, BOARD MEMBER (Ex- OFFICIO)

Troy has devoted a lifetime career and commitment to serving humanity with the greatest need.

Through his work across the US and in over 80 countries around the world, he has dedicated efforts to change lives of people with disabilities, poor, homeless, refugees, asylum seekers, survivors of human trafficking, and others facing violence, poverty, and social injustice. Throughout his life he has had a calling to serve those with disabilities and special needs.

Greisen received a degree in Education at Kansas University, with a minor in Recreational Therapy and emphasis in Special Education. He served in several key leadership positions for Special Olympics International, in the US and worldwide, including Managing Director of Special Olympics Asia Pacific, based in New Delhi, India. He continued his career as President & CEO with several local/state nonprofit organizations including Special Abilities of North Texas and Ability Connection Texas. Greisen continues to volunteer and consult with Special Olympics, and as a Pastor.

He has three grown children, Alexander, Hannah and Elijah, and now a 21 month old with his wife Amanda. He and his family reside outside of Fort Worth, Texas. Greisen enjoys serving the church, spending time with his family, golfing, basketball, tennis, bowling, scuba diving and is a big sports fan.

Email: tgreisen@cfcsyndrome.org

Jeff Kohler, CPA

PAST President, board of directors

Jeff and his wife Linda had a daughter, Stephanie, with CFC syndrome. Stephanie passed away in 2011 at age 24. In honor of Stephanie, Jeff and Linda started a scholarship fund. The fund allows families with a financial need to attend the CFC conference.

Jeff is a CPA and recently retired from the accounting firm PricewaterhouseCoopers, where he was a tax partner. Prior to that, he worked for General American Life Insurance Company.

Previously, Jeff has served on several other boards of directors, including DAKOTA (an organization to foster further involvement of dads in the activities of their children with disabilities), the St. Louis Public Schools Foundation, St. Joseph Home for Families, and Ride on St. Louis (therapeutic horsemanship for children with disabilities).

Jeff was awarded the 2022 CFC International Community “Linda Kohler Volunteer Service Award” for his decade of work with families in the CFC syndrome community. Jeff resides in St. Louis, Missouri, and enjoys serving on the CFC International Board.

Alexis Nash

PRESIDENT, board of directors

Alexis lives in Buford, Georgia with her husband, Russell, and children Harris and Ella Grace. Ella Grace was born in 2018 and was diagnosed prenatally with CFC Syndrome.

After graduating with a Bachelor of Accounting from Georgia Southern University, Alexis began her career as an intern at Wilson Lewis. She was named as a Tax Partner in 2018. Her expertise in comprehensive tax planning, consulting, and compliance as well as her diverse experience with corporations, partnerships, nonprofit organizations, and individuals helps a wide range of clients manage their accounting needs and plan for future growth.

Her passion for children has been a longstanding one, as she has served on several boards and committees that benefit Children’s Healthcare of Atlanta, Prevent Child Abuse America, and Rainbow Village. The diagnosis of her daughter Ella Grace sparked an interest to get more involved with CFC International where she currently serves on the Finance Committee and as a Family Liaison assisting newly diagnosed families navigate their new diagnosis.

Richard Boyce, PhD

Board Member
chair, Research

Richard Boyce is Richard D Boyce is Associate Professor of Biomedical Informatics and Clinical and Translational Science in the Clinical and Translational Science Institute at the University of Pittsburgh.

He has served as faculty of Geriatric Pharmaceutical Outcomes and Gero-Informatics Research and Training Program and the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh School of Medicine.

His research interests are in the design and evaluation of intelligent clinical decision support interventions, distributed and collaborative knowledge bases, and  advanced pharmacovigilance signal detection management.

He and his wife Kriss live in Pittsburgh, Pennsylvania with their six children. They have a daughter with CFC Syndrome.

Email: research@cfcsyndrome.org

Glenda Hux, PhD, OT

SECRETARY, Board of Directors

A graduate of the University of Mississippi School of Medicine, Glenda Hux has been an Occupation Therapist for almost 20 years. She is the founder and owner of Go To Speciality Therapy in Brookhaven, Mississippi.

She served as the President of the Mississippi Occupational Therapy Association in 2019, and has been a leader in her community by serving on boards and as a former President of the Junior Women’s Auxiliary of Brookhaven.

In 2018, Glenda and her husband Kevin began their mission to raise funds for seizure research in CFC Syndrome. They created Lillian’s Legacy, a dedicated community committed to raising money for seizure research. Their daughter Lillian passed away in 2017 from complications of seizures and her drive to protect all children with CFC Syndrome “shines on” in Lillian’s Legacy. They have raised more than $70,000 over two years.

Glenda and her husband Kevin live in Brookhaven, Mississippi and are the parents of Lillian who was diagnosed with CFC Syndrome.

Darin Iacobelli, CPA

TREASURER, Board of Directors

The Iacobelli’s joined the CFC family in 2008 with the birth of Nola and her CFC diagnosis. Darin is a CPA and Partner in a Long Island, NY accounting firm where he oversees a risk management and internal audit practice. He has been a part of the CFC finance committee for over 8 years. Darin earned an accounting degree from the University of Scranton and an MBA from Hofstra University. He also serves as a Board member on the Long Island Chapter of Certified Fraud Examiners. Jenny Iacobelli, Nola’s mom and Darin’s wife, was a past CFC Board President from 2010-2018. Nola, Jenny and Darin live on Long Island, NY with their two dogs Chewie and Marshall.

Pilar Magoulas, MS, CGC

VICE PRESIDENT, BOARD OF DIRECTORS
Vice Chair, Research

Pilar Magoulas is a certified genetic counselor and Assistant Professor in the Department of Molecular and Human Genetics at Texas Children’s Hospital and Baylor College of Medicine.  She received her Bachelor of Science degree in Psychology from the University of Florida in 2001 and a Master of Science degree in Genetic Counseling from Northwestern University in 2003. 

Pilar currently works as a pediatric genetic counselor at Texas Children’s Hospital where she serves as the Manager of the Pediatric Genetics clinic, and Chief of the Division of Genetic Counseling.  Pilar is a member of the National Society of Genetic Counselors and American College of Medical Genetics. She serves on the Board of directors for CFC International, support group for individuals with Cardio-facio-cutaneous syndrome, on the Scientific Advisory Council for the National Foundation for Ectodermal Dysplasias, and the RASopathies Network USA, and serves on the Program Committee for the American College of Medical Genetics and Genomics. 

Pilar and her family live in the Houston, Texas area.

Dr. Vidya Ramabadran

board member

Vidya hails from India and graduated in medicine from Pondicherry institute of medical sciences and has worked in family medicine in south India.

Her son Rajiv has CFC syndrome. Since Rajiv’s birth, Vidya has focused all her time and resources on his upbringing. Even with a medical education, she encountered major challenges in her son’s diagnosis and treatment. Her experience has made her a strong advocate for improving awareness of CFC among the medical community. Having been on both ends of healthcare delivery, she is a strong believer in empowering parents with knowledge of this rare condition and also educating health care providers on the comprehensive multi organ tests needed to provide the best care for our kids. She is currently serving as a family liaison helping families new to CFC syndrome finding the right medical resources in Central Alabama!

Vidya and her husband Lakshmin live in Birmingham, Alabama with their two children Rajiv and Kyra. Rajiv was diagnosed with CFC syndrome at 2.5 years of age and continues to thrive under his mother’s care.