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DTSTART;TZID=UTC:20260322T140000
DTEND;TZID=UTC:20260322T150000
DTSTAMP:20260412T120305
CREATED:20260119T222527Z
LAST-MODIFIED:20260227T213853Z
UID:15375-1774188000-1774191600@ulf.org
SUMMARY:Upcoming Webinar: Activities and Fitness for the whole family
DESCRIPTION:Activities and Fitness for the Whole Family! \n\n\n\nJoin 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. \n\n\n\nLiving 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. \n\n\n\nMost 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: \n\n\n\nYou are not alone. \n\n\n\nTogether\, we will explore opportunities that help individuals and families live fuller\, healthier\, and more connected lives. \n\n\n\nPresented by: Margaret Halter\, ULF AmbassadorHosted by: ULF Ambassador United Leukodystrophy Foundation \n\n\n\nWho Should Join:Families -adults\, children with disabilities and any other family members who want to be part of the fun! \n\n\n\nMeeting Details:Sunday March 22nd\, 2026 1 pm CST / 2 pm EST
URL:https://ulf.org/event/upcoming-webinar-activities-and-fitness-for-the-whole-family/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2026/01/Untitled-design14.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260316T200000
DTEND;TZID=America/New_York:20260316T210000
DTSTAMP:20260412T120305
CREATED:20260217T222028Z
LAST-MODIFIED:20260227T214156Z
UID:15544-1773691200-1773694800@ulf.org
SUMMARY:Monday 3/16/26 Online Caregiver Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from ULF Ambassadors Margaret Halter and Roger Locy\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, March 16\, 2026 @ 8:00 PM ET / 7:00 PM CT
URL:https://ulf.org/event/online-caregiver-support-group/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2026/02/Caregiver-Support-3.16.26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260208T130000
DTEND;TZID=UTC:20260208T140000
DTSTAMP:20260412T120305
CREATED:20250805T174135Z
LAST-MODIFIED:20250912T201957Z
UID:14339-1770555600-1770559200@ulf.org
SUMMARY:Caregiver Support Group 2/8/26
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, February 8\, 2026 @ 1:00 PM ET / 12:00 PM CT
URL:https://ulf.org/event/caregiver-support-group-2-8-26/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/2.8.26-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260119T200000
DTEND;TZID=UTC:20260119T210000
DTSTAMP:20260412T120305
CREATED:20250805T173905Z
LAST-MODIFIED:20250912T201932Z
UID:14335-1768852800-1768856400@ulf.org
SUMMARY:Caregiver Support Group 1/19/26
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Margaret Halter and Roger Locy ULF Ambassadors\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, January 19\, 2026 @ 8:00 PM ET / 7:00 PM CT
URL:https://ulf.org/event/caregiver-support-group-1-19-26/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/1.19.26-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260118T140000
DTEND;TZID=America/New_York:20260118T150000
DTSTAMP:20260412T120305
CREATED:20251024T211811Z
LAST-MODIFIED:20251024T211818Z
UID:14809-1768744800-1768748400@ulf.org
SUMMARY:ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
DESCRIPTION: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. \n\n\n\n\n\n\n\nPresented by: Catherine L. Becker\, CNP  Hosted by: Marla Chapleau ULF Ambassador United Leukodystrophy Foundation \n\n\n\n\n\n\n\n\n\n\nWho 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. \n\n\n\nMeeting Details:Sunday January 18th\, 2025 1 pm CST / 2 pm EST
URL:https://ulf.org/event/ulf-webinar-the-guardianship-transition-minor-child-to-legal-adult/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://ulf.org/wp-content/uploads/2025/10/The-Guardianship-Transition-Minor-Child-to-Legal-Adult.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251214T130000
DTEND;TZID=UTC:20251214T140000
DTSTAMP:20260412T120305
CREATED:20250805T173600Z
LAST-MODIFIED:20250912T201545Z
UID:14330-1765717200-1765720800@ulf.org
SUMMARY:Caregiver Support Group 12/14/25
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, December 14th @ 1:00 pm ET / 12:00 pm CT
URL:https://ulf.org/event/caregiver-support-group/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/12.14.25-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251117T200000
DTEND;TZID=UTC:20251117T210000
DTSTAMP:20260412T120305
CREATED:20250805T173329Z
LAST-MODIFIED:20250912T201854Z
UID:14327-1763409600-1763413200@ulf.org
SUMMARY:Caregiver Support Group 11/17/25
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Margaret Halter and Roger Locy ULF Ambassadors\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, November 17\, 2025 @ 8:00 PM ET / 7:00 PM CT
URL:https://ulf.org/event/caregiver-support-group-11-17-25/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/11.17.25-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251109T140000
DTEND;TZID=America/New_York:20251109T150000
DTSTAMP:20260412T120305
CREATED:20251024T175638Z
LAST-MODIFIED:20251024T181940Z
UID:14767-1762696800-1762700400@ulf.org
SUMMARY:ULF Webinar: First Aid and CPR Webinar: Modified strategies that guide you to care for your child safely and confidently
DESCRIPTION:Presented by: Christina Schnell Community Services Coordinator St. John Ambulance  \n\n\n\nHosted by: Marla Chapleau ULF Ambassador United Leukodystrophy Foundation  \n\n\n\n\n\n\nHello – 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. \n\n\n\n\n\n\nWho 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. \n\n\n\nMeeting Details:Sunday November 9th\, 2025 1 pm CST / 2 pm EST
URL:https://ulf.org/event/ulf-webinar-first-aid-and-cpr-webinar-modified-strategies-that-guide-you-to-care-for-your-child-safely-and-confidently/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://ulf.org/wp-content/uploads/2025/10/First-Aid-and-CPR.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251012T130000
DTEND;TZID=UTC:20251012T140000
DTSTAMP:20260412T120305
CREATED:20250805T172926Z
LAST-MODIFIED:20250912T201702Z
UID:14323-1760274000-1760277600@ulf.org
SUMMARY:Caregiver Support Goup 10/12/25
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, partners\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, October 12th @ 1:00 PM ET/ 12:00 PM CT
URL:https://ulf.org/event/caregiver-support-goup-10-12-25/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/10.12.25-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250915T200000
DTEND;TZID=UTC:20250915T210000
DTSTAMP:20260412T120305
CREATED:20250805T153005Z
LAST-MODIFIED:20250912T201832Z
UID:14298-1757966400-1757970000@ulf.org
SUMMARY:Caregivers Support Group 9/15/25
DESCRIPTION: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. \n\n\n\nWhat to Expect:  \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Margaret Halter and Roger Locy ULF Ambassadors\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, September 15th @ 8:00 PM ET/ 7:00 PM CT
URL:https://ulf.org/event/caregivers-support-group-15/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/08/9.15.25-Caregiver-Online-Support-Group-ULF.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250810T130000
DTEND;TZID=UTC:20250810T140000
DTSTAMP:20260412T120305
CREATED:20250805T171203Z
LAST-MODIFIED:20250805T211333Z
UID:14303-1754830800-1754834400@ulf.org
SUMMARY:Caregivers Support Group 8/10/25
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\nWhat 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. \n\n\n\nWho 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. \n\n\n\nMeeting Details:Sunday\, August 10\, 2025 @ 1:00 PM ET / 12:00 PM CT
URL:https://ulf.org/event/caregivers-support-group-8-10-25/
CATEGORIES:Event,support group
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250615T120000
DTEND;TZID=UTC:20250615T130000
DTSTAMP:20260412T120305
CREATED:20250130T210144Z
LAST-MODIFIED:20250130T210146Z
UID:13390-1749988800-1749992400@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, June 15th\, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here
URL:https://ulf.org/event/caregivers-support-group-14/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250519T200000
DTEND;TZID=UTC:20250519T210000
DTSTAMP:20260412T120305
CREATED:20250130T204128Z
LAST-MODIFIED:20250130T205802Z
UID:13372-1747684800-1747688400@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from ULF Ambassadors Margaret Halter and Roger Locy\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, May 19th @ 8pm ET / 7pm CTRegister Here
URL:https://ulf.org/event/caregivers-support-group-13/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/1-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250413T120000
DTEND;TZID=UTC:20250413T130000
DTSTAMP:20260412T120305
CREATED:20250130T202932Z
LAST-MODIFIED:20250130T202952Z
UID:13360-1744545600-1744549200@ulf.org
SUMMARY:Caregiver Online Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, April 13th\, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here
URL:https://ulf.org/event/caregiver-online-support-group/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250317T190000
DTEND;TZID=UTC:20250317T200000
DTSTAMP:20260412T120305
CREATED:20250130T202803Z
LAST-MODIFIED:20250314T145054Z
UID:13369-1742238000-1742241600@ulf.org
SUMMARY:Caregiver Online Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from ULF Ambassadors Margaret Halter and Roger Locy\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday\, March 17th @ 8pm ET / 7pm CTRegister Here
URL:https://ulf.org/event/caregiver-online-support-group-13/
CATEGORIES:Event,support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250316T150000
DTEND;TZID=UTC:20250316T160000
DTSTAMP:20260412T120305
CREATED:20250116T000038Z
LAST-MODIFIED:20250306T232605Z
UID:12828-1742137200-1742140800@ulf.org
SUMMARY:ULF Webinar: Addressing Digestive Issues from Infancy through Adolescence
DESCRIPTION: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. \n\n\n\n\n\nMeeting Details:Sunday March 16th 3pm ET / 4pm CT
URL:https://ulf.org/event/ulf-webinar-addressing-digestive-issues-from-infancy-through-adolescence/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape13.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250209T120000
DTEND;TZID=America/Chicago:20250209T130000
DTSTAMP:20260412T120305
CREATED:20250115T203546Z
LAST-MODIFIED:20250130T200656Z
UID:12707-1739102400-1739106000@ulf.org
SUMMARY:Caregiver Online Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from Marcie Flores ULF Board Member and Jamie Barlow ULF Ambassador\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Sunday\, February 9th\, 2025 @ 12:00 PM CST / 1:00 PM ESTRegister Here
URL:https://ulf.org/event/caregiver-online-support-group-12/
CATEGORIES:support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape11.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250202T130000
DTEND;TZID=UTC:20250202T140000
DTSTAMP:20260412T120305
CREATED:20250115T220600Z
LAST-MODIFIED:20250117T174504Z
UID:12807-1738501200-1738504800@ulf.org
SUMMARY:ULF Webinar: Family Planning as a Carrier
DESCRIPTION:Join us for an insightful webinar\, “Family Planning as a Carrier\,” hosted by Julie Cohen\, ScM\, CGC from Kennedy Krieger Institute. \n\n\n\nThis 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. \n\n\n\nWhether 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. \n\n\n\n\n\n\nWho Should Join:This session is designed for individuals and their family\, who carry genetic mutations linked to leukodystrophies and are exploring family planning options. \n\n\n\nMeeting Details:Sunday February 2nd\, 2025 1pm CST / 2pm EST
URL:https://ulf.org/event/ulf-webinar-family-planning-as-a-carrier/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250120T190000
DTEND;TZID=America/Chicago:20250120T200000
DTSTAMP:20260412T120305
CREATED:20250115T190403Z
LAST-MODIFIED:20250117T173557Z
UID:12669-1737399600-1737403200@ulf.org
SUMMARY:Caregivers Online Support Group
DESCRIPTION: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. \n\n\n\nCaring 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. \n\n\n\n\n\n\nWhat to Expect: \n\n\n\n\nA safe\, nonjudgmental environment to share your experiences and feelings.\n\n\n\nPeer-to-peer support from caregivers who understand your journey.\n\n\n\nGuidance and insights from ULF Ambassadors Jamie Barlow and John Locy\, who bring both personal and community-based expertise.\n\n\n\n\nWho Should Join:This group is open to caregivers of individuals affected by leukodystrophies\, including parents\, spouses\, family members\, or close friends. \n\n\n\nLet 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. \n\n\n\nMeeting Details:Monday Jan 20th 8pm ET / 7pm CTRegister Here
URL:https://ulf.org/event/caregivers-online-support-group/
CATEGORIES:support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2025/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape9.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241208T120000
DTEND;TZID=America/Chicago:20241208T130000
DTSTAMP:20260412T120305
CREATED:20240115T204251Z
LAST-MODIFIED:20250117T173727Z
UID:7698-1733659200-1733662800@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:Register here
URL:https://ulf.org/event/caregivers-support-group-12/
CATEGORIES:support group
ATTACH;FMTTYPE=image/jpeg:https://ulf.org/wp-content/uploads/2024/01/12-December.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241201T130000
DTEND;TZID=America/Chicago:20241201T140000
DTSTAMP:20260412T120305
CREATED:20241104T165118Z
LAST-MODIFIED:20241104T205135Z
UID:11657-1733058000-1733061600@ulf.org
SUMMARY:Mental Health Over the Holidays - WEBINAR
DESCRIPTION: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. \nSarah Stoney\, MSW\, LCSW is a Social Worker\, Division of Neurology  at Children’s Hospital of Philadelphia (CHOP) \nRegister here
URL:https://ulf.org/event/mental-health-over-the-holidays-webinar/
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/11/Mental-Health-holiday.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241124T130000
DTEND;TZID=America/Chicago:20241124T140000
DTSTAMP:20260412T120305
CREATED:20240115T204133Z
LAST-MODIFIED:20241003T164713Z
UID:7695-1732453200-1732456800@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:Register here https://us02web.zoom.us/meeting/register/tZAkcu6tqzojG9QDAaqPyml1YvS8skoO83qg \n 
URL:https://ulf.org/event/caregivers-support-group-11/
CATEGORIES:support group
ATTACH;FMTTYPE=image/jpeg:https://ulf.org/wp-content/uploads/2024/01/11-November.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241103T130000
DTEND;TZID=America/Chicago:20241103T140000
DTSTAMP:20260412T120305
CREATED:20241024T174702Z
LAST-MODIFIED:20241024T175247Z
UID:11506-1730638800-1730642400@ulf.org
SUMMARY:Adaptive Toys & Games Webinar
DESCRIPTION:  \nLindsey White\, Certified Therapeutic Recreation Specialist\, Holland Bloorview Kids Rehabilitation Hospital\, Toronto\, Canada\, will present on accessible recreation opportunities and modifications. \nMany 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. \nClick here to register!
URL:https://ulf.org/event/adaptive-toys-games-webinar/
LOCATION:https://us02web.zoom.us/j/89329347963?pwd=vcutbKLr8qEYPiuCTdleJKXgo1mQCD.1
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/10/Adaptive-Toys-Games-Facebook-Post.png
ORGANIZER;CN="United Leukodystrophy Foundation":MAILTO:office@ulf.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241027T120000
DTEND;TZID=America/Chicago:20241027T130000
DTSTAMP:20260412T120306
CREATED:20240115T204015Z
LAST-MODIFIED:20241003T165159Z
UID:7692-1730030400-1730034000@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:Register here https://us02web.zoom.us/meeting/register/tZUqceCrqz8iH9a-l6zuKZu_4X5AOAsqrF8l#/registration \n  \n 
URL:https://ulf.org/event/caregivers-support-group-10/
CATEGORIES:support group
ATTACH;FMTTYPE=image/jpeg:https://ulf.org/wp-content/uploads/2024/01/10-October.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241006T130000
DTEND;TZID=America/Chicago:20241006T140000
DTSTAMP:20260412T120306
CREATED:20240910T211905Z
LAST-MODIFIED:20241001T175627Z
UID:11402-1728219600-1728223200@ulf.org
SUMMARY:Newly Diagnosed: What Comes Next?
DESCRIPTION: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. \nStephanie 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. \nRegister here: https://us02web.zoom.us/meeting/register/tZAvdeyhrj4uGtZTwFULr1SBh_A5uSFPSDu6
URL:https://ulf.org/event/newly-diagnosed-what-comes-next/
LOCATION:https://us02web.zoom.us/j/84225905402?pwd=JOXPJ7YdfGePljPisdb8hQXI63IUb6.1
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/09/Newly-Diagnosed1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241001T190000
DTEND;TZID=America/Chicago:20241001T200000
DTSTAMP:20260412T120306
CREATED:20240115T203848Z
LAST-MODIFIED:20241001T185940Z
UID:7689-1727809200-1727812800@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:Register here \n 
URL:https://ulf.org/event/caregivers-support-group-9/
CATEGORIES:support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240908T130000
DTEND;TZID=UTC:20240908T140000
DTSTAMP:20260412T120306
CREATED:20240815T211743Z
LAST-MODIFIED:20240815T211743Z
UID:11175-1725800400-1725804000@ulf.org
SUMMARY:WEBINAR: Meet The Ambassadors
DESCRIPTION: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. \nThe 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. \nRegister here  
URL:https://ulf.org/event/webinar-meet-the-ambassadors/
LOCATION:Virtual
CATEGORIES:Event,Webinar
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/08/Meet-the-Ambassadors-Webinar-1920-x-1080-px1-1.png
ORGANIZER;CN="United Leukodystrophy Foundation":MAILTO:office@ulf.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240825T120000
DTEND;TZID=America/Chicago:20240825T130000
DTSTAMP:20260412T120306
CREATED:20240115T202336Z
LAST-MODIFIED:20240822T212258Z
UID:7686-1724587200-1724590800@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:Register here
URL:https://ulf.org/event/caregivers-support-group-8/
CATEGORIES:support group
ATTACH;FMTTYPE=image/png:https://ulf.org/wp-content/uploads/2024/01/Caregiver-Online-Support-Group-Facebook-Post-Landscape.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240802
DTEND;VALUE=DATE:20240805
DTSTAMP:20260412T120306
CREATED:20240429T163634Z
LAST-MODIFIED:20240429T163634Z
UID:10663-1722556800-1722815999@ulf.org
SUMMARY:Elise's Corner: AXD Family Summit 2024
DESCRIPTION:https://axdsummit2024.com \nConnections that Matter. The AxD community – patients\, scientists\, clinicians\, and advocates – will be meeting August 2 – 4\, 2024 in Philadelphia at CHOP. \nFrom the organizers: \nThe 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. \nFor details and registration\, please follow this link: www.axdsummit2024.com. \nIf 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!
URL:https://ulf.org/event/elises-corner-axd-family-summit-2024/
LOCATION:Children’s Hospital of Philaelphia
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240728T130000
DTEND;TZID=America/Chicago:20240728T140000
DTSTAMP:20260412T120306
CREATED:20240115T202048Z
LAST-MODIFIED:20240315T221241Z
UID:7683-1722171600-1722175200@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:https://us02web.zoom.us/meeting/register/tZErcOGorDktGtTXhhDyS4CYudQYODskfGL1
URL:https://ulf.org/event/caregivers-support-group-7/
END:VEVENT
END:VCALENDAR