Cure LBSL: Patient & Scientific Conference

Please join the Kennedy Krieger Institute and Cure LBSL as they co-host a weekend of hope, updates, and education at the 4th biannual LBSL International Conference.

Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation – or LBSL – is an ultra-rare, genetic, neurodegenerative mitochondrial leukodystrophy caused by pathogenic variants on the DARS2 gene.

Please join patients, families, advocates, researchers, clinicians, and regulators from around the world at this exciting event. You can attend in-person in Baltimore, Maryland, or virtually on Zoom. This event will be recorded and shared.
Travel:
We have secured discounted room rates at the Residence Inn Baltimore – Johns Hopkins Medical Campus, a modern, accessible hotel located less than two blocks from the conference center and clinic sites. Cure LBSL has a limited number of travel grants available to offset the cost of traveling to this event. Please contact bmcginn@curelbsl.org for more details about the grant, or visit the Cure LBSL travel resources page for more options.
Research:
As a 2024 LBSL International Conference participant, you may be eligible to participate in no-cost research opportunities. This may include a neurogenetics clinic visit, the LBSL Natural History Study, a research MRI, and/or participation in other research studies  such as the NIH MINI study. For more information or to schedule a clinic visit, please email geneticsclinic@kennedykrieger.org, or select the option to be contacted for research on your conference registration form. During the conference, if you have questions about research, please email Leukodystrophy_Clinical_Research_Team@kennedykrieger.org.
Accessibility and Inclusion:
This is a family-friendly event, and we want this conference to be as inclusive as possible. There is no charge for participation in the conference, and some meals will be provided during the event (see agenda). Please let us know if you have dietary restrictions or allergies. Childcare and teen activities will be provided on site. Language translation/interpretation services will be available to in-person and virtual participants. The conference facility is fully accessible for those with mobility needs, and Cure LBSL has funding to offset travel costs if you require a care partner to assist you. Lactation rooms, breastmilk refrigeration & shipping services, and sensory/meditation spaces will be available on site. Please use the registration form to let us know about your comfort and accessibility needs.

MEDIA CONSENT:
All registrants must review and respond to the Media Consent as a part of registration. If you decline Media Consent, you are still able to join us for the conference.

VIRTUAL ATTENDEES:
The virtual portion of the meeting will be hosted by Zoom.  It will be recorded and posted on the Cure LBSL and/or Kennedy Krieger websites, using platforms such as YouTube and/or Vimeo. If you do not want to be identified during these meetings, please turn off your camera, change your profile name, and avoid asking questions in the chat, Q&A section, or by raising your hand and/or speaking.  We will not be able to edit individual participants in the recordings.

PHOTOGRAPHY & VIDEOGRAPHY:
There will be photographers and videographers at the event. Individuals may be taking photographs at the event, too. We will make every effort to be respectful of your privacy. Please see a conference staff member if you would like to avoid being photographed or recorded.
SOCIAL MEDIA:
Cure LBSL and/or Kennedy Krieger Institute will be sharing details and images of the conference on social media, including Facebook, Instagram, X, LinkedIn, etc. Speakers and staff have consented to share their information on social media. Individual participants require additional care and consideration. Please do not post any pictures or identifying information from individual participants without their consent.
FUTURE USE OF IMAGES:
Cure LBSL and/or Kennedy Krieger may want to use photographs of you or your child for future purposes, such as brochures or on their website.  If that is the case, they will contact you for additional consent.

For all questions, or for more information, please email info@curelbsl.org