United Leukodystrophy Foundation

Caregivers Support Group
2024-10-27 12:00 - 13:00 (America/Chicago)
Register here https://us02web.zoom.us/meeting/register/tZUqceCrqz8iH9a-l6zuKZu_4X5AOAsqrF8l#/registration

Newly Diagnosed: What Comes Next?
2024-10-06 13:00 - 14:00 (America/Chicago) | https://us02web.zoom.us/j/84225905402?pwd=[REDACTED]
Join us for the “Newly Diagnosed: What Comes Next? webinar with Stephanie Keller, MD, where she will discuss the steps you should consider taking after a new diagnosis.
Stephanie Keller, MD, is a Pediatric Neurologist at Children’s Healthcare of Atlanta and Associate Professor of pediatrics and neurology at Emory University School of Medicine. She serves as Medical Director of the Neurogenetic and Metabolic Disease Program, as well as Director of the Leukodystrophy Care Network Certified Center at Children’s.
Register here: https://us02web.zoom.us/meeting/register/tZAvdeyhrj4uGtZTwFULr1SBh_A5uSFPSDu6

Caregivers Support Group
2024-10-01 19:00 - 20:00, 2024-08-25 12:00 - 13:00 (America/Chicago)
Register here

WEBINAR: Meet The Ambassadors
2024-09-08 13:00 - 14:00 UTC | Virtual
At ULF’s June conference, we announced our Ambassador Program. Ambassadors are people who have lived experience with leukodystrophy, and are therefore, the best candidates to understand and help address your needs. You may recall the first time you heard the word leukodystrophy and how you felt. Many feel lost, alone, and uncertain as to where to turn.
The Ambassador Program formalizes and expands the support ULF has been providing to the community for so many years. Through regional and local Ambassadors, we guide patients and families through their journey at their own pace. This is done through offering education, tools and resources specifically designed to help those who are affected by leukodystrophy, so they are better informed and the sense of feeling so alone is reduced. You will meet our Ambassadors and learn about their backgrounds and commitment to supporting other affected patients and families.
Register here

Elise's Corner: AXD Family Summit 2024
2024-08-02 - 2024-08-04 | Children’s Hospital of Philaelphia
https://axdsummit2024.com
Connections that Matter. The AxD community – patients, scientists, clinicians, and advocates – will be meeting August 2 – 4, 2024 in Philadelphia at CHOP.
From the organizers:
The AxD Summit will take place beginning the evening of Friday, August 2, and continue all day Saturday, August 3, at The Children’s Hospital of Philadelphia! Additional optional meetings are planned for Sunday, August 4, for interested families. We hope that you are able to attend.
For details and registration, please follow this link: www.axdsummit2024.com.
If you are interested in a clinical or research visit on August 1 or August 2, please fill out the survey, here: https://redcap.chop.edu/surveys/?s=L3DEHHCKRR84LLXA. Please note that we only have a limited number of clinical and research spots available. We will do our best to accommodate as many of you as possible!

Caregivers Support Group
2024-07-28 13:00 - 14:00 (America/Chicago)
https://us02web.zoom.us/meeting/register/tZErcOGorDktGtTXhhDyS4CYudQYODskfGL1

Cure LBSL: Patient & Scientific Conference
2024-07-26 - 2024-07-29 | The Harry and Jeanette Weinberg Building at 1741 Ashland Avenue, Baltimore, MD 21205
The Harry and Jeanette Weinberg Building at 1741 Ashland Avenue, Baltimore, MD 21205

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

ADLD Center: 2nd International Symposium on ADLD
2024-07-23 | Mayo Clinic, Rochester, MN, USA
For more information: https://adld.center/

Caregivers Support Group: Father's Day Group
2024-06-16 12:00 - 13:00 (America/Chicago)
**This session will be geared towards fathers for Father’s Day**
https://us02web.zoom.us/meeting/register/tZYrfu-upzovGtH_E8PNaaLHbxNoeWjqbEky
