https://axdsummit2024.com Connections that Matter. The AxD community - patients, scientists, clinicians, and advocates - will be meeting August 2 - 4, 2024 in Philadelphia at CHOP. From the organizers: The 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! …
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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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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 …
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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 …
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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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