United Leukodystrophy Foundation

Caregiver Support Group 2/8/26
2026-02-08 13:00 - 14:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Member Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, February 8, 2026 @ 1:00 PM ET / 12:00 PM CT

Caregiver Support Group 1/19/26
2026-01-19 20:00 - 21:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassadors, Margaret Halter and Roger Locy, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Margaret Halter and Roger Locy ULF Ambassadors, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday, January 19, 2026 @ 8:00 PM ET / 7:00 PM CT

ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
2026-01-18 14:00 - 15:00 (America/New_York)
Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She has worked in the MGH Leukodystrophy clinic since 2011, working with a multidisciplinary team caring for both pediatric and adult patients with leukodystrophy.

Presented by: Catherine L. Becker, CNP Hosted by: Marla Chapleau ULF Ambassador United Leukodystrophy Foundation

Who Should Join:Families, caregivers, and advocates preparing for the transition from pediatric to adult care and guardianship for individuals with lifelong or complex medical conditions.

Meeting Details:Sunday January 18th, 2025 1 pm CST / 2 pm EST

Caregiver Support Group 12/14/25
2025-12-14 13:00 - 14:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Member Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, December 14th @ 1:00 pm ET / 12:00 pm CT

Caregiver Support Group 11/17/25
2025-11-17 20:00 - 21:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassadors, Margaret Halter and Roger Locy, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Margaret Halter and Roger Locy ULF Ambassadors, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday, November 17, 2025 @ 8:00 PM ET / 7:00 PM CT

ULF Webinar: First Aid and CPR Webinar: Modified strategies that guide you to care for your child safely and confidently
2025-11-09 14:00 - 15:00 (America/New_York)
Presented by: Christina Schnell Community Services Coordinator St. John Ambulance

Hosted by: Marla Chapleau ULF Ambassador United Leukodystrophy Foundation

Hello – my name is Christina and as a parent of a child with a disability who has had to navigate the challenges of modifying emergency care standards, I understand the unique needs and concerns families face. My daughter Natalie has SMA – which has lead her to choking incidents, open wounds, mental health and more.I have been in the First Aid world for over 20 years with certificates as a lifeguard, first aid instructor and firefighter; I am here to share modified strategies that guide you to care for your child safely and confidently.

Who Should Join:Ideal for parents, guardians, and care providers supporting children with disabilities or complex health conditions. Medical professionals, educators, and community members seeking to better understand adaptive first aid strategies are also welcome.

Meeting Details:Sunday November 9th, 2025 1 pm CST / 2 pm EST

Caregiver Support Goup 10/12/25
2025-10-12 13:00 - 14:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Member Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, October 12th @ 1:00 PM ET/ 12:00 PM CT

Caregivers Support Group 9/15/25
2025-09-15 20:00 - 21:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassadors Margaret Halter and Roger Locy, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Margaret Halter and Roger Locy ULF Ambassadors, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday, September 15th @ 8:00 PM ET/ 7:00 PM CT

Caregivers Support Group 8/10/25
2025-08-10 13:00 - 14:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Member Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:• A safe, nonjudgmental environment to share your experiences and feelings.• Peer-to-peer support from caregivers who understand your journey.• Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, partners, family members, or close friends.Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, August 10, 2025 @ 1:00 PM ET / 12:00 PM CT

Caregivers Support Group
2025-06-15 12:00 - 13:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Memeber Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, June 15th, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here

Caregivers Support Group
2025-05-19 20:00 - 21:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassadors Margaret Halter and Roger Locy, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from ULF Ambassadors Margaret Halter and Roger Locy, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday, May 19th @ 8pm ET / 7pm CTRegister Here

Caregiver Online Support Group
2025-04-13 12:00 - 13:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Memeber Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, April 13th, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here

Caregiver Online Support Group
2025-03-17 19:00 - 20:00 UTC
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassador Margaret Halter, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from ULF Ambassadors Margaret Halter and Roger Locy, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday, March 17th @ 8pm ET / 7pm CTRegister Here

ULF Webinar: Addressing Digestive Issues from Infancy through Adolescence
2025-03-16 15:00 - 16:00 UTC
Digestive issues related to leukodystrophy can be challenging across the ages and particularly with children. Please join Dr. Nichole Jaffe, a Pediatrician and Complex Care physician at Children’s Hospital of Philadelphia, who will provide an indepth discussion of the various digestive issues children and adolescences face and how to address them.

Meeting Details:Sunday March 16th 3pm ET / 4pm CT

Caregiver Online Support Group
2025-02-09 12:00 - 13:00 (America/Chicago)
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Board Member Marcie Flores and ULF Ambassador Jamie Barlow, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Sunday, February 9th, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here

ULF Webinar: Family Planning as a Carrier
2025-02-02 13:00 - 14:00 UTC
Join us for an insightful webinar, “Family Planning as a Carrier,” hosted by Julie Cohen, ScM, CGC from Kennedy Krieger Institute.

This webinar will offer valuable information and a supportive space for carriers and their families to learn, ask questions, and feel empowered in their family planning journey.

Whether you are beginning to explore family planning or looking for expert advice tailored to carriers, this session is for you. Don’t miss this opportunity to gain knowledge and connect with a trusted expert in the field.

Who Should Join:This session is designed for individuals and their family, who carry genetic mutations linked to leukodystrophies and are exploring family planning options.

Meeting Details:Sunday February 2nd, 2025 1pm CST / 2pm EST

Caregivers Online Support Group
2025-01-20 19:00 - 20:00 (America/Chicago)
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by ULF Ambassadors Jamie Barlow and Roger Locy, this group provides a safe and welcoming space for caregivers to connect, share experiences, and find mutual support.

Caring for a loved one with leukodystrophy can be both rewarding and challenging. This support group is here to help caregivers navigate the journey with compassion, understanding, and practical advice. Whether you’re seeking emotional support, tips for managing day-to-day responsibilities, or simply a place to talk with others who understand, this group is here for you.

What to Expect:

A safe, nonjudgmental environment to share your experiences and feelings.

Peer-to-peer support from caregivers who understand your journey.

Guidance and insights from ULF Ambassadors Jamie Barlow and John Locy, who bring both personal and community-based expertise.

Who Should Join:This group is open to caregivers of individuals affected by leukodystrophies, including parents, spouses, family members, or close friends.

Let this be a place of connection and strength for you as you continue your caregiving journey. Together, we can support one another and build a stronger community.

Meeting Details:Monday Jan 20th 8pm ET / 7pm CTRegister Here

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

Mental Health Over the Holidays - WEBINAR
2024-12-01 13:00 - 14:00 (America/Chicago)
As we approach the holiday season, it is important to remember that holidays can be stressful. This stress can worsen symptoms of a mental health condition, such as depression, anxiety, and loneliness. Please join Sarah Stoney, MSW, LCSW for an informative presentation and discussion on strategies to cope with holiday stress.
Sarah Stoney, MSW, LCSW is a Social Worker, Division of Neurology at Children’s Hospital of Philadelphia (CHOP)
Register here

Caregivers Support Group
2024-11-24 13:00 - 14:00 (America/Chicago)
Register here https://us02web.zoom.us/meeting/register/tZAkcu6tqzojG9QDAaqPyml1YvS8skoO83qg

Adaptive Toys & Games Webinar
2024-11-03 13:00 - 14:00 (America/Chicago) | https://us02web.zoom.us/j/89329347963?pwd=[REDACTED]
Lindsey White, Certified Therapeutic Recreation Specialist, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada, will present on accessible recreation opportunities and modifications.
Many of us enjoy playing games and participating in activities. A simple adaptation can allow for players of all capabilities to join in on the fun. Learn some neat methods and tools to help the physically challenged feel included.
Click here to register!

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

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/
