How To: Community Awareness Events The Power of the Community Join us as we illustrate and expand on the many ways you can spread leukodystrophy awareness and raise funds for the cause! Energize your local community by organizing an awareness event. Dr. Mousumi Bose, a ULF Board of Directors Member, rare disease researcher, and a …
Please join us on November 8, 2023 at 1 PM Eastern / 12 PM Central / 11 AM Mountain / 10 AM Pacific! Fill out the form below to register, and you will receive a confirmation email with the Zoom link to join us on November 8.
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 …
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 …
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 …
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 …
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 …
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 …
ULF Webinar: Addressing Digestive Issues from Infancy through Adolescence Read More »
