Thank you to all those who helped make "Help for Today, Hope for Tomorrow," the first annual LBSL Conference, such a success.
This two-day event brought together patients and families from around the globe to learn from one another and to hear some of the world's top doctors and scientists specializing in leukodystrophies.
Presentations from the event can be viewed below:
Clinical Discussion of LBSL and Clinical Trial
Presenter: Ali Fatemi, MD, MBA
Management of Mitochrondrial Disease: The Role of Supplements and Emergency Protocols
Presenter: Hilary Vernon, MD, PhD
Overcoming Social Challenges Associated with Leukodystrophy and Chronic Illness
Presenter: Kiley Morgart, LCSW-C
Advocating for Yourself/Advocating for Your Child
Presenter: Maureen Van Stone, Esq., MS
Genetics 101: What Does It Mean to Have an LBSL-Specific Mutation?
Presenter: Rebecca McClellan
One Man's Perspective on LBSL
Presenter: Ed Blakely
Fundraising to Find a Cure
Presenter: Leslie Marsiglia
Nutrition and LBSL
Presenter: Elizabeth Enagonio, MS, RD, CSP, LDN
Function and Malfunction of Mirochondria and tRNA Synthetases Made Easy
Presenter: Aleksandra Trifunovic
Clinical Studies Update
Presenter: Amena Smith, MD, PhD
Presenter: Christina Nemeth Mertz, PhD