Contact
Ruth O'KeefeThinkGenetic Foundation
844-259-4004
ruth@thinkgenetic.org
A Special Event for Nurses and Allied Health Professionals Serving the Parishes of Lafayette
Join the ThinkGenetic Foundation for a FREE Lunch and Learn on June 20
CLOSING THE GAP IN ACADIANA: INCREASING EDUCATION AND ACCESS TO GENETICS SERVICES
Learn about the clues in patient medical history that could suggest an underlying genetic cause for their health issues with a focus on conditions more common in Acadiana.
AGENDA: THURSDAY, JUNE 20, 2019, 11:00 AM - 1:00 PM
REGISTRATION, WELCOMING AND LUNCH
Our discussion today is designed to be informative and interactive. While there will be outlined topics we encourage you to share your thoughts and questions throughout the event.
WHY THINK ABOUT GENETICS?
Genetic diseases often mimic more common medical issues; however many also have “red flags” that can provide clues as to which patients require a genetic evaluation. This practical talk will review these red flags for key genetic conditions, discuss available resources, and suggest possible next steps for diagnosis.
THE IMPORTANCE OF GENETIC DIAGNOSIS: A LOCAL PERSPECTIVE
In her work as a Supervisor in the Hospital Admissions Department in Lafayette, Margaret quickly learned which health problems resulted in admissions. She noticed many “frequent flyers” at the emergency room came in with similar medical issues again and again and that their treatment plans did not help them from getting worse. This piqued her interest in finding possible reasons for specific health issues she saw in admissions and in her family’s medical history. Margaret investigated an learned about genetic conditions that could be underlying these medical issues. This discussion will highlight the importance of early identification of genetic conditions and the perspective of a member of the Lafayette medical education community with family members living with genetic conditions.
TI IN IT FOR G: TECHNOLOGICAL INNOVATIONS IN GENETIC DIAGNOSIS TO HELP YOU
The application of technological innovations helping healthcare providers identify patients at increased risk of a genetic condition has resulted in very useful tools. In this presentation Carol will discuss and demonstrate some of these tools.
PATIENT PANEL DISCUSSION
As a healthcare provider you have a very unique opportunity with each patient. Sometimes clues in patient medical history suggest an underlying genetic cause for health issues. Learn from your local patient community about the conditions more common in the Acadiana community and chat about ways you can help drastically improve the care of patients and members of their families. Special discussion will include ways to engage with areas where access to care can directly effect long-term outcomes.
SPEAKERS
CAROL OGG, BS PHARM
Carol Ogg is a licensed clinical pharmacist whose direct patient care experience makes her a valuable advocate in educating the community. Carol has held leadership roles in the biotech industry and worked on meeting the unmet needs of patients around the globe living with rare genetic disorders. She has moderated patient advisory boards and continues to publish information for patients and industry professionals on rare genetic disorders. Carol consults with many players in the rare community while also working a pharmacist at Grady Health System in Atlanta.
DAWN LANEY, MS, CGC - GENETIC COUNSELOR
Dawn Jacob Laney is a genetic counselor, assistant professor, clinical researcher, and director of the genetic clinical trials center in the Department of Human Genetics at Emory University in Atlanta, Georgia. She is a co-founder of ThinkGenetic, Inc., who strives to empower patients seeking possible genetic causes for their medical issues or looking for real-life answers to their questions about the impact of living with a genetic disease. Dawn has written many books for children and teens living with genetic conditions in addition to her dedication to direct patient care.
MARGARET LANDRY-BEARB - RETIRED, HOSPITAL ADMISSIONS COORDINATOR
Margaret worked with Lafayette Charity/University Medical Center for 30 years. In addition to her job as Admissions Supervisor in the Emergency Room she also worked as an assistant to directors in Nursing and Administration. After retirement, she went to work as a Grant Assistant with the UL College of Nursing. Margaret’s experiences and observations in several medical settings heightened her interest in finding solutions to unmet patient needs and outcomes. A caregiver at heart, Margaret enjoys helping family, friends and the elderly with their medical dilemmas. She currently resides in Lafayette where she and her husband raised their 3 children, all UL Alumni.
PATIENT PANEL DISCUSSION
ANNIE ARABIE, PATIENT ADVOCATE
Annie is the second generation of a deafblind family in Lafeyette and was born with Usher Syndrome. Annie volunteers her time at Amelia Manor Nursing Home which is the nursing home of the largest population of the deaf and deafblind residents in Louisiana. She is the proud mother of two sons and is a graduate of Louisiana School for the Deaf in Baton Rouge.
CYNTHIA BORDELON DURHAM, PATIENT ADVOCATE
Cynthia worked at East Jefferson Hospital and the Jefferson Parish Sheriff’s Office before moving on to become a Detective in Personal Violence. After serving the community for many years she retired due to complications with Fabry disease, a rare genetic condition. She is a proud mother of two girls and two boys and has lost a daughter and son. Cynthia has been married for 19 years and is a grandmother of 10 grandchildren and two great-grandchildren. In addition, Cynthia hold an AS and BA degree.
DAN ARABIE, FOUNDER OF LA HELEN KELLER DEAFBLIND AWARENESS
Dan was born with Usher Syndrome and is devoted to serving the deafblind and deaf communities as a leader and advocate. After retiring from the USPS, Dan has served in leadership positions for many important organizations including the Louisiana Association for the Deaf, Louisiana Acadiana Deaf Blind Citizens, and the American Association of the DeafBlind. He organized and lead a DeafBlind rally at the State Department of Social Service in Baton Rouge which was instrument in helping pass new SSP legislation. Dan is the CEO of the Deaf Bayou e-News, one of the nation's most popular publications geared toward the deaf and deafblind. Dan is also the proud father of four daughters and alumni of the Louisiana School for the Deaf and of Gallaudet University in Washington, D.C.
MATTHEW LAFLEUR, PATIENT AMBASSADOR AT FARA
Matthew is a native of Opelousas. He was diagnosed with Friedreich's ataxia when he was ten and transitioned to using a wheelchair at age eighteen. He attended ULL and went on to earn a master's degree from LSU. Matthew is dedicated to raising awareness of his disorder as a patient advocate for the Friedreich's Ataxia Research Alliance (FARA), is a weekly columnist at Friedreich's Ataxia News, and is a moderator of the Friedreich's Ataxia News Forums. He recently welcomed a new addition to his life: Zeego, the service dog.
ROBIN RICHARDSON, PATIENT ADVOCATE
Robin Richardson lives in Baton Rouge and is the mother of three sons. She and one son are living with Fabry disease. Presently, she is on a patient advisory board and promotes awareness through the Governor's Proclamation for Fabry Disease.
About the ThinkGenetic Foundation
ThinkGenetic Foundation is a non-profit 501(c)3 charity whose mission is to improve the quality of life for those living with or at risk for a genetic condition through education, quality information, access to genetic counseling and genetic testing, and partnerships with the advocacy community. Learn more at thinkgenetic.org.
This opportunity is sponsored, in part, by an educational grant from:
