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)