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 […]
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 […]
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 […]
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: […]
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 […]
