webinar

ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult

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: …

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ULF Webinar: First Aid and CPR Webinar: Modified strategies that guide you to care for your child safely and confidently

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 …

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ULF Webinar: Addressing Digestive Issues from Infancy through Adolescence

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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WEBINAR: Meet The Ambassadors

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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