Brenda lives with her husband, Cliff, their adult son Clifford (CFC) and an adorable Havapoo named Rossi in Vestal, NY. Clifford’s older sister Paige is a fashion designer in NYC.
Brenda incorporated the CFC Family Network in 1999 after three years of endless trips out of state with her husband and child to find out what rare syndrome their son was born with. In 2003, the organization revised the name to reflect their ongoing outreach to all areas of the world. Under Brenda’s leadership, CFC International established an exclusive BioBank of DNA and clinical data. This valuable collection was instrumental in the 2006 CFC gene discoveries. Brenda was also named as a co-author on this historical paper.
Brenda has a BS in Education from Bloomsburg University. She obtained her MS degree in Special Education from Binghamton University. Brenda was employed by the Binghamton, NY City School District as a special education teacher for 34 years and retired from her position as Coordinator of Work-Study, Transition Services, and the School Based Intervention Team in 2012.
Gina holds a Master’s Degree in Public Administration with an emphasis on Non-profit Sector Management from California State University-Northridge and a BA in Sociology from Siena College. She brings proven leadership and management skills, as well as experience working in the rare disease field to the position of Executive Director.
Gina’s most recent experience includes working at the Children’s Cardiomyopathy Foundation as the Manager of Patient Outreach & Support, overseeing all services for children diagnosed with cardiomyopathy and their families; as well as outreach and relationship building among the medical community. She has spent her career in the non-profit field and has extensive experience working with youth and families, providing counseling and support, developing programs and educational resources, training, managing volunteer programs, creating awareness initiatives and building collaborative partnerships. She is honored to join the CFC International team and looks forward to advancing its mission and continuing the vital work or the organization.
Gina lives in the Albany, New York area with her husband and two young children.
Jenny holds a Masters of Public Health from New York Medical College in Environmental Science. She works in the Department of Global Environmental Affairs and Safety at The Estee Lauder Companies, one of the world’s leading manufacturers and marketers of prestige beauty products with a family of more than 30 brands. As the Executive Director of Global Retail EHS, Jenny is responsible for administration and oversight of all environmental, health and safety programs including compliance, wellness, and corporate responsibility in the retail sector.
Jenny lives in Long Island, NY with her husband Darin and daughter Nola Rose who was born with CFC syndrome.
Molly lives in Arroyo Grande, California with her husband, Ernie, and daughters, Leanne and Emily. Emily was born on 11/21/1997 with a BRAF deletion and was diagnosed with CFC at two years of age. Molly has served on the Board of Directors of CFC International since 2000. She was involved in the discoveries of the genes responsible for CFC and was also part of the team who published the management guidelines for CFC. Molly is proud to be involved in the growth and success of CFC International.
Molly enjoys supporting families affected by CFC by helping them to find answers to the myriad of questions that come with a diagnosis. Molly graduated from Cal Poly, San Luis Obispo with a BS in Business Administration and helps to run her family-owned restaurant.
Shelly lives in Edmond, OK with her husband, Coby, and daughters Kinley and Kamden. Shelly graduated from Oklahoma Baptist University with a bachelor’s degree in Healthcare Administration. She works as a Capital Account Executive for Medtronic Patient Monitoring and Recovery, where she partners with healthcare organizations and hospitals in the implementation of monitoring and device optimization, with a focus on oxygenation, ventilation and perfusion. Shelly serves on Medtronic Patient Monitoring’s Commercial Leadership Council and is a Field Sales Trainer.
As a mother of a teenager affected by CFC Syndrome, Shelly is active within the CFC International community. Shelly also serves on the Board of the Oklahoma Family Network (OFN), her state’s Family-to-Family Health Information Center, where she was previously a supporting parent. Shelly is also a Partners in Policymaking Graduate, anchoring her to advocacy and partnership with elected officials to positively change the way people with disabilities live, work, and are educated.
Pilar is a Genetic Counselor, Assistant Professor, and Genetics Clinic Manager at Texas Children’s Hospital and Baylor College of Medicine. She received her BS degree in Psychology from the University of Florida and obtained her MS in Genetic Counseling from Northwestern University in Chicago, Illinois in 2003.
Pilar initially became interested in CFC syndrome in 2002 after seeing a patient with CFC in the genetics clinic during graduate school. After graduation, she worked as a pediatric genetic counselor at the University of Utah in Salt Lake City. She became actively involved in the medical genetics and metabolic genetics clinics. Pilar also became involved with CFC International at that time and has thoroughly enjoyed her growing and expanding role within this great organization.
Pilar’s primary responsibilities at Texas Children’s Hospital now include the coordination of the inpatient consultation service, managing the Genetics Clinic and supervising the genetic counselors, research coordinators, nurses and office staff.
Luba Djurdjinovic, MS is the Executive Director of Ferre Institute, Inc., a non-profit organization in Binghamton, NY that provides services in community based genetic counseling with a mission to support communities and its medical providers. She is also Director of its Genetic Counseling Programs. She is a practicing genetic counselor with clinical interests in issues of infertility, prenatal and adult genetics. Luba is one of the originally trained genetic counselors in the US.
In her 37 years of practice, she has been active in many state and national genetic professional organizations. She is the past president of the National Society of Genetic Counselors and a recipient of its National Achievement Award. Luba is the immediate past president of the NYS Perinatal Association. Luba has been a principle investigator on several projects with the National Human Genome Research Institute (Human Genome Project), Bethesda, MD. In 2005, she received national recognition with a special award from the Genetic Alliance. This recognition and award honored her efforts in supporting families with rare diseases attempting to identify their disease gene. Luba is an author in a leading textbook for genetic counseling students and lectures extensively.
Cara and her husband, Peter, live in Sinking Spring, PA and have three children, Colleen (16), Kieran (14), and Leah (6-CFC). They have been part of CFC International since 2010 when Leah was diagnosed with a BRAF mutation at 8 months old. They stay busy trying to keep up with the older kids sport’s schedules that include cheerleading, football, basketball and baseball. Luckily, Leah is a huge fan of her brother and sister and loves to tag along.
Cara’s background is in chemical engineering and after leaving the field to stay home and raise their children for almost 15 years, she has recently returned to the workforce. Cara has embarked on a new career and is the marketing manager for a telecommunications company called Agility Communications Group.
A volunteer for CFC International since 2012, Cara sends out the thank you letters for the donations that are received by the organization. In addition, she has also been involved in volunteering for MOMS Club International, a support group for at-home mothers, for over 15 years and currently serves as an Assistant Regional Coordinator. Cara has found CFC International to be a great support in Leah’s CFC journey and is looking forward to giving back by serving as a board member.
Les lives in Roseburg, Oregon with his wife, Jennifer, and daughters Aurora and Gloria. Gloria was born in 2013 and was diagnosed at eight months old with CFC. Les is an advocate for the developmentally disabled community, and his experience growing up with a disabled adopted sister helped prepare him well for life as an advocate at the regional and state level in Oregon. Les is a Human Development Instructor and Advisor for the TRiO program at Umpqua Community College. Les has also worked as a high school teacher, and a football coach at an early college charter school in California.
Les is passionate about informing and supporting families affected by CFC Syndrome, Infantile Spasms/West Syndrome, and the greater developmentally disabled community. Les holds a B.A. in Economics and a Master of Public Administration Degree from California State University, Stanislaus. Les is also a credentialed teacher in both California and Oregon.
Libby Airhart currently lives in Breaux Bridge, Louisiana with husband, Jason, and 3 children; Ryker (9), Jackson (8), and Amelie (3.5). Amelie, born in July of 2013, was diagnosed at 10 months old with CFC syndrome. Amelie also has a metabolic condition diagnosis.
Libby is a graduate of the National Emergency Medical Services academy and is a certified Emergency Medical Technician (EMT), certified in Emergency dispatch, and is CPR certified. After 12 years in the medical profession, she is highly knowledgeable in the medical world. Libby is a huge advocate for the disabled. She is involved in many special needs organizations and has also created her own local Facebook page for special needs families in her area.
Libby is very passionate about CFC syndrome. She has entered Amelie into pageants around the state, basically to get the word out about her syndrome. Libby is willing to help educate as many people as possible about CFC. She stays in close touch with her local state families and cherishes those special times together with them. New to the board, she looks forward to working to the best of her ability to serve our families and the organization.