Carmel Hartman in the news
Carmel daughter of Sophie Hartman in the news
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A wish mom’s story: Sophie
Wish mom Sophie shares her family’s story and how her daughter’s (Carmel) wish transformed their lives.
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Carmel in a Make-A-Wish Interview
Carmel is an amazing little girl battling Alternating Hemiplegia of Childhood. She was able to Make-A-Wish in 2017 and she was chosen to be the featured wish for WISH NIGHT …
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My one-in-a-million daughter
Nineteen month old Anya suffers from a rare neurological disorder which causes paralyses down one side of her body, tremors and breathing problems. https://www.bbc.co.uk/programmes/p074bd2m?fbclid=IwAR3XhL_3Mak6xpV5txrOU0DNExZbNPvYPP5zR_zuZLBjEHuQUlXC_593JKY The condition affects just one in …
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Fiorella Gurrieri at the ATP1A3 Symposium in Disease, Chicago 2018
Professor Fiorella Gurrieri tells us about an exciting new project that she is working on. Gurrieri´s research group is doing research with cell lines that have 5 of the ATP1A3 …
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Catherine Brownstein – ATP1A3 Symposium in Disease, Chicago 2018
Dr. Brownstein is an Instructor of Pediatrics at Harvard Medical School, a Research Associate in Genetics and Genomics at Boston Children’s Hospital, and the Manager of the Molecular Genomics Core …
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AAV gene therapy for AHC – Any donation is a step forward
Please support this campaign: Go Fund Me Simon Frost, father to Annabel Frost, tells us how YOU can help shape the future for thousands and possibly millions og people by …
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Dystonia – Documentary about the disorder
This is a short documentary produced by Ryan Murphy. It shows the daily struggles of the lives of 3 people who have a neurological movement disorder called Dystonia. For more …
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Dr Brashear Explains Alternating Hemiplegia of Childhood
Allison Brashear, MD of the Department of Neurology at Wake Forest University discusses the symptoms and genetics of Alternating Hemiplegia of Childhood.
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This is the journey of Dax
Dax is diagnosed with Alternating Hemiplegia of Childhood (AHC), a very rare neurological disorder that affects 1 in every million. After trying everything to ease Dax´s episodes his parents tried …
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