All About IEP’s Navigating special education and the IEP process can feel overwhelming. Join ULF Ambassador Misty Powers for a practical discussion based on Wrightslaw: All About IEPs, focusing on how parents and educators can better understand, navigate, and advocate throughout the IEP process. The discussion will cover key components of an IEP, effective advocacy […]
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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
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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:
ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult Read More »
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
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
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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
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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
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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
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