LBSL Conference

April 18 (All day) to April 19 (All day)

Kennedy Krieger Institute and "A Cure for Ellie" Present a Conference on LBSL

"Help for Today, Hope for Tomorrow"Ellie and Dr. Fatemi

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:

  • The different faces of LBSL
  • Genetics of LBSL, simplified
  • General management of LBSL and mitochondrial diseases
  • Antioxidant therapy of LBSL
  • LBSL and nutrition
  • Overcoming social challenges associated with rare diseases
  • Physical and occupational therapies
  • Basics of clinical trials
  • Update on pre-clinical research
  • Update on clinical research in LBSL

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.

Agenda                                                       Register Now

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 following hotels offer discounted hotel rates. To get the discount, please asked for the KKI/JHH rate.

Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
800 N Wolfe Street
Baltimore, MD 21205

Baltimore Marriott Waterfront Hotel
700 Aliceanna Street
Baltimore, MD 21202

Admiral Fell Inn, an Ascend Hotel Collection Member
888 S Broadway
Baltimore, MD 21231

For additional accommodation options, please click here

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. 

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