United Leukodystrophy Foundation

Intro to Adaptive Tai Chi: Safe Movement for Every Ability
2026-05-31 19:00 - 20:00 (Africa/El_Aaiun)
Tai chi is a mindful movement practice that improves relaxation skills, mental focus, and physical alignment. With nearly 15 years of tai chi practice and more than two decades as a research physical therapist for people with neurodegenerative disorders, Jen is enthusiastic to offer classes in tai chi that are accessible to all ages, abilities, and physical conditions. Certified by Tai Chi Health (R) to teach programs in Tai Chi Fundamentals Adapted and Tai Chi Prime (evidence-based fall prevention program), Jen will offer an introductory class that can be done in sitting, standing with support (walker, cane, chair for support), or standing without support.

Monday 5/18/26 Online Caregiver Support Group
2026-05-18 20:00 - 21:00 (America/New_York)
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by 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, 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, May 18, 2026 @ 8:00 PM ET / 7:00 PM CT

Sunday 4/12/26 Online Caregiver Support Group
2026-04-12 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, 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, April 12, 2026 @ 1:00 PM ET / 12:00 PM CT

Upcoming Webinar: Activities and Fitness for the whole family
2026-03-22 14:00 - 15:00 UTC
Activities and Fitness for the Whole Family!

Join the United Leukodystrophy Foundation for an inspiring and informative webinar designed for families, adults, and children living with Leukodystrophies, as well as the loved ones and friends who walk beside them on this journey. This session will explore meaningful ways to support physical health, emotional well-being, and quality of life through accessible activities, fitness, and everyday wellness practices.

Living with Leukodystrophy brings unique challenges, but it also reveals incredible strength, resilience, and community. This webinar will highlight practical ideas for incorporating movement, healthy routines, and adaptive activities into daily life—no matter your age, ability, or stage of the journey. Whether it’s gentle exercise, family-centered activities, or simply finding moments of joy and connection, you will discover options that empower and uplift.

Most importantly, this is a space of encouragement, understanding, and hope. You will connect with others who truly understand, learn from shared experiences, and be reminded of an important truth:

You are not alone.

Together, we will explore opportunities that help individuals and families live fuller, healthier, and more connected lives.

Presented by: Margaret Halter, ULF AmbassadorHosted by: ULF Ambassador United Leukodystrophy Foundation

Who Should Join:Families -adults, children with disabilities and any other family members who want to be part of the fun!

Meeting Details:Sunday March 22nd, 2026 1 pm CST / 2 pm EST

Monday 3/16/26 Online Caregiver Support Group
2026-03-16 20:00 - 21:00 (America/New_York)
Join the United Leukodystrophy Foundation (ULF) for a virtual support group designed specifically for caregivers of families affected by leukodystrophies. Hosted by 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, 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, March 16, 2026 @ 8:00 PM ET / 7:00 PM CT

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 (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
