April 18 and 19, 2018
Baltimore, Maryland, USA
About the Conference
Kennedy Krieger Institute, one
of the world’s premier neurogenetic research and treatment facilities, and the
nonprofit patient advocacy organization “A Cure for Ellie” are teaming up to
host the conference specifically for patients and doctors interested in or affected by LBSL (leukoencephalopathy with brain stem and spinal cord involvement
with lactate elevation). This two-day event will present information to help those
living with LBSL manage their condition. We will bring together patients and families
from around the globe to learn from one another and to hear from some of the
world’s top doctors and scientists specializing in leukodystrophies. Subjects
include:
There
will also be time set aside for group discussion among patients, and for special
one-on-one time with doctors during our “Meet the Expert” breakout session.
Tentative Agenda
Who Should Attend?
LBSL patients of all ages are welcome to attend, and
families with young children are encouraged to bring their little ones. On-site
childcare will be available during the sessions. Accommodations for individuals with wheelchairs
and other mobility tools are readily available.
Registration Information
The cost of registration is $50 per person (children under
12 are free) and will include breakfast and lunch. Register before February 16,
2018, to receive the “early bird” discount of $35 per person.
Hotel Information
The
Residence Inn Marriott at The Johns Hopkins Medical Campus is offering a discounted
hotel rate of $192 per night for a single bedroom, and $187 per night for a studio. The hotel is located across the street from the conference. To make reservations, call 443-524-8400, or visit the hotel's website. To get the discounted rate, please ask for the KKI/JHH rate.
Travel Information
For those flying to Baltimore for the conference, the closest
airport is the Baltimore/Washington International Thurgood Marshall Airport located
approximately 20 minutes south of Kennedy Krieger Institute.
Train service to Washington, Philadelphia, New York and other East Coast cities departs from Baltimore’s Pennsylvania Station at Charles Street, north of Mt. Royal Avenue, about 10 minutes from Kennedy Krieger.
Kennedy Krieger is located at 801 North Broadway and is
minutes away from Baltimore’s famed Inner Harbor, a scenic waterfront area with
shopping malls, restaurants and open-air attractions.
Contact
If you have questions about the conference, please contact Connor
Murray at 443-923-2776. If you need help registering for the event,
please contact Nichole Reimers at 443-923-7390.