BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//United Leukodystrophy Foundation - ECPv6.15.11//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://ulf.org
X-WR-CALDESC:Events for United Leukodystrophy Foundation
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20250810T130000
DTEND;TZID=UTC:20250810T140000
DTSTAMP:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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:20260412T133348
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240726
DTEND;VALUE=DATE:20240730
DTSTAMP:20260412T133348
CREATED:20240408T154044Z
LAST-MODIFIED:20240408T154141Z
UID:10569-1721952000-1722297599@ulf.org
SUMMARY:Cure LBSL: Patient & Scientific Conference
DESCRIPTION:  \nThe Harry and Jeanette Weinberg Building at 1741 Ashland Avenue\, Baltimore\, MD 21205 \n\nPlease 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. \n  \nLeukoencephalopathy 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. \nPlease 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.\nTravel:\nWe 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.\nResearch: \nAs 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.\nAccessibility and Inclusion:\nThis 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. \n  \n  \nMEDIA CONSENT:\nAll 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. \n  \nVIRTUAL ATTENDEES: \nThe 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. \n  \nPHOTOGRAPHY & VIDEOGRAPHY: \nThere 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.\nSOCIAL MEDIA:\nCure 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.\nFUTURE USE OF IMAGES:\nCure 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. \nFor all questions\, or for more information\, please email info@curelbsl.org
URL:https://ulf.org/event/cure-lbsl-patient-scientific-conference/
LOCATION:The Harry and Jeanette Weinberg Building at 1741 Ashland Avenue\, Baltimore\, MD 21205
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240723
DTEND;VALUE=DATE:20240724
DTSTAMP:20260412T133348
CREATED:20240410T192036Z
LAST-MODIFIED:20240410T192036Z
UID:10582-1721692800-1721779199@ulf.org
SUMMARY:ADLD Center: 2nd International Symposium on ADLD
DESCRIPTION:For more information: https://adld.center/
URL:https://ulf.org/event/adld-center-2nd-international-symposium-on-adld/
LOCATION:Mayo Clinic\, Rochester\, MN\, USA
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240616T120000
DTEND;TZID=America/Chicago:20240616T130000
DTSTAMP:20260412T133348
CREATED:20240115T195945Z
LAST-MODIFIED:20240315T220923Z
UID:7679-1718539200-1718542800@ulf.org
SUMMARY:Caregivers Support Group: Father's Day Group
DESCRIPTION:**This session will be geared towards fathers for Father’s Day** \nhttps://us02web.zoom.us/meeting/register/tZYrfu-upzovGtH_E8PNaaLHbxNoeWjqbEky \n 
URL:https://ulf.org/event/caregivers-support-group-6/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240526T130000
DTEND;TZID=America/Chicago:20240526T140000
DTSTAMP:20260412T133348
CREATED:20240115T195322Z
LAST-MODIFIED:20240315T220629Z
UID:7676-1716728400-1716732000@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:https://us02web.zoom.us/meeting/register/tZ0qd-uqpjgoHtPBh2F91AO9VMZlvMMNx0TD
URL:https://ulf.org/event/caregivers-support-group-5/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240421T120000
DTEND;TZID=America/Chicago:20240421T130000
DTSTAMP:20260412T133348
CREATED:20240115T195202Z
LAST-MODIFIED:20240315T220424Z
UID:7673-1713700800-1713704400@ulf.org
SUMMARY:Caregivers Support Group
DESCRIPTION:https://us02web.zoom.us/meeting/register/tZ0ucu-trjgsGNcfKkX2yML4FA9sCaqstRC2
URL:https://ulf.org/event/caregivers-support-group-4/
END:VEVENT
END:VCALENDAR