March 4 Agenda

 

12 PM - 12:30 PM - KEYnote: Building Virtual Models in Genetics - the dream home

Natasha Shur, MD, Geneticist

Children’s National Health System, Washington, D.C.


12:30 PM - 1 PM - Telemedicine clinic challenges

Eric Wallace, MD, FASN, Associate Professor of Medicine

UAB eMedicine, Medical Director

Rare Genetic Kidney Disease Clinic/Divison of Nephrology

University of Alabama at Birmingham


1:00 PM - 1:30 PM - Telemedicine Panel

Moderator: Anna C.E. Hurst, MD, MS, FACMG, UAB

Eric Wallace, MD, FASN, UAB

Nathanial Robin, MD, FACMG, UAB

Bruce Korf, MD, PhD, UAB

Natasha Shur, MD, Children’s National

Asiah Borden, BS


1:45 PM - 3:15 PM - Novel Therapeutics

Matt Might, PhD

Director, Hugh Kaul Precision Medicine Institute

University of Alabama at Birmingham


1:45 Pm - 2:15 PM - Antisense Olignonucleotide therapeutics for rare neurological diseases

Frank Bennett, PhD, Chief Scientific Officer and Neurology

Ionis Pharmaceuticals


2:15 PM - 2:45 PM - Using crispr to create precision animal models of rare diseases

Laura Lambert, PhD, Assistant Professor

Co-Director of UAB Transgenic & Genetically Engineered

Departments of Genetics

University of Alabama at Birmingham


2:45 PM - 3:15 Pm - therapeutics panel

Moderator: Matt Might, PhD, UAB

Q & A Moderator: Emily K. Johnson, BS, UAB

Deann Wallis, PhD, UAB

Brittany Lasseigne, PhD, UAB

Camerron Crowder, PhD, UAB

Renie Moss, BS, UAB


3:30 PM - 4:30 PM - Patient and parent Rare Disease Advocate panel: Finding your voice through vulnerability

Moderator: Swapna Kakani, Alabama Rare, rare warrior with Short Bowel Syndrome

Q & A Moderator: Brooke Thomas, Alabama Rare, mother to three rare warriors with MPS1

Morgan Cheek

Co-Host of Grief Sown Podcast, Mother to three- two rare warriors no longer on earth, Author @seedsandleaven (instagram)

Effie Parks

Host of Once Upon a Gene Podcast, Parent to rare warrior with CTNNB1 @onceuponagene.podcast (instagram)

Seth Rotberg

Board Member of Huntington’s Disease Youth Organization @srotberg15 (instagram)

Rasheera Dopson

Founder of Beauty with a Twist, Disability Justice Activist, Author @rasheeradopson (instagram)